PatHligHt - Pulmonary Hypertension Association

Transcription

A newsletter of the Pulmonary Hypertension Association
0 Summer 2011 0 Volume 20 No. 3
Pathlight
PHA launches
telephone support
group! See p. 30
Highl ights
PHenomenal Lives
3
International Faces
5
Conversations in
Caregiving
8
Our Journeys
12
Health Matters
14
Ask a PH Specialist
14
Research Corner
17
“Helpful Hints”
19
Meet the Doctor 20
Advancing the Cause 21
Insurance Advocacy
24
Advocacy in Action
25
Support Groups
30
Special Events
34
Community Classroom 37
PHenomenal Youth
39
Family PHocus
41
A Voice Beyond Our Numbers: New PH
Legislation Provides a Powerful Tool for Change
We all have the right to ask our government to help us
solve problems that none of us can solve alone.
~ Steve White, PHA Board Member, after a visit to Capitol Hill
T
he Tom Lantos Pulmonary
Hypertension Research and
Education Act of 2011, named
for the late Congressman and PH
champion Tom Lantos, was introduced
this year by Reps. Kevin Brady (R-TX)
and Lois Capps (D-CA) and Sen. Bob
Casey (D-PA). The bill keeps Congress,
the Centers for Disease Control (CDC)
and the National Institutes of Health
(NIH) talking about PH. It calls for:
• Research through the NIH to
help improve PH diagnosis and
ultimately find a cure;
• CDC programs to make medical
professionals and the general
public more aware of PH and help
end misdiagnosis.
For the PH community, a bill
in Congress is a tool for change.
There may be only 20,000-30,000
diagnosed patients in the U.S.,
but when we educate our senators
and representatives and ask them
to co-sponsor the Tom Lantos PH
Research and Education Act, we have
an impact beyond our numbers.
Past advocacy by the PH
community has led to new Centers of
Excellence in PH, new PH research
at the NIH, and new PH-awareness
initiatives for patients and medical
professionals. We’ve come a long way.
The new PH Research and Education
Act of 2011 can take us even further.
story continued on page 25
M e s s a g e f r o m ph a ’ s b o a r d c h a i r
Laura Hoyt D’Anna, DrPH
Do what you can, with
what you have, where
you are.
~ Theodore Roosevelt
A
s you can see from
the front-page story
in this issue, the
Tom Lantos PH Research and Education
Act was recently introduced in both
the Senate (S. 775) and the House of
Representatives (H.R. 1810)! This act
is essential to furthering our mission
because:
1. It is the only PH-specific bill in
Congress;
2. It is focused on education for
medical professionals and the public
with the intent to end misdiagnosis;
and
3. It encourages increased funding
for PH research at the National
Institutes of Health (NIH) in order to
improve PH treatment and to find a
cure.
On May 20, while I was formulating
some ideas for this letter, my daughter’s
first grade class had the amazing
opportunity to visit the Long Beach Police
Department and spend time with the
chief. (At this point you are wondering,
“How does this relate to pulmonary
hypertension?” Please bear with me!)
The chief delivered an inspiring
message to wide-eyed 6- and 7-year-olds
about how success in life is determined
by one’s ability to face challenges “head
on … and then to pick oneself up and
dust oneself off” after experiencing
disappointment. He shared highlights
from his own life’s journey, which
entailed overcoming various formidable
obstacles ultimately to take the reins
of an extremely vital and complex
peacekeeping unit.
While sitting in the chief’s office, I
thought about how this important life
lesson applies to the PH journey and
our newly introduced PH Research and
Education Act.
Diagnosis with PH is a life-altering,
often overwhelming collection of
challenges all rolled into one. After
diagnosis, it is understandably difficult to
think in terms of dusting off and moving
ahead, but many who are affected by
PH have discovered that finding a way to
fight back helps to regain some control.
Advocacy is one of those ways.
Rep. Kevin Brady (R-TX) has
introduced the Tom Lantos PH Research
and Education Act in Congress every two
years since 2000. Over the last decade,
through our collective advocacy and
conversations with Members of Congress
about the bill, we have changed the
landscape of PH research.
Specifically, these efforts have led
the NIH to more than triple its annual
investment in PH, and have resulted
in the Centers for Disease Control and
Prevention funding PH awareness and
patient-serving programs through PHA.
Together we have made a difference,
and I think it has become clear to
Members of Congress that we will not
quit until this bill passes!
With your help, we have an
unprecedented opportunity to accomplish
our goal during this Congressional
session! If advocacy is not an area in
which you have been involved, I would
like to encourage you to read the cover
article and its related articles on pages
25-27 to learn how PHA makes it easy
for you to communicate the difference
that this bill will make in your life and
the lives of those who have yet to be
diagnosed with PH. Your personal story
alone has the power to gain support
from your Congressional Members, and
together our collection of stories makes
us unstoppable!
As you leaf through the pages of
this edition of Pathlight, you will find
countless examples of how members
of our community have done what they
could, with what they have, where they
are! You are undoubtedly one of these
involved members, and it is with deep
gratitude and admiration that I ask you
to do yet one more thing for our cause.
In partnership,
pathlight: a user’s guide
PHenomenal
Lives
Health
Matters
Advancing
the Cause
Look for this icon to direct you
m e d i c a l p r o f e s s i o n a l s to important information for
healthcare providers.
2
www.PHAssociation.org
Community
Classroom
PHenomenal
Youth
international
news
Family
PHocus
Look for this icon throughout
Pathlight to read news from around
the world.
PATHLIGHT SUMMER 2011
P H e n o m e n a l L i v e s
I Have So Many Doctors … Whom Do I Call?!
A Patient Interviews an Associated Disease Specialist on Coordinating Care among Doctors
F
or patients with more than one chronic illness, a
coordinated health plan and a coordinated health team
are key to positive outcomes. As a person with pulmonary
arterial hypertension and congenital heart disease, I deal with
the delicate balancing act of coordinating different medical
teams continuously. This past spring, I had the privilege of
interviewing congenital heart disease specialist, Dr. Alison
Meadows, about coordinating care among specialists.
As the director of the Adult Congenital Heart Program
for Northern California Kaiser Permanente, she deals with a
variety of congenital heart patients every day, many of whom
are living with multiple chronic diseases such as PH, liver
disease, etc. Here she answers some of my questions about
how to figure out just who’s responsible for what.
What can I do to facilitate communication among my
specialists between appointments?
It is very important for patients who have chronic
diseases to have their doctors communicate with each
other. More importantly, it is very important for the patient to
facilitate this if it is not already happening. If your doctors are
not communicating and sharing information, ask them to do
so. Make sure that all the doctors have all the records from
your tests, follow-up letters, second-opinion letters and notes
from the doctors who are part of your care. Be sure that you
are active in your care and medical decisionmaking.
What should I do if two of my doctors disagree about a
course of treatment?
It is important to find out why they disagree. Some
disagreements are simply differences in style; some are
based on provider experience. Often there are no right or
wrong answers. Importantly, the patient must be comfortable
with the ultimate decision. Patients should seek a second
opinion if they are not sure how to proceed. If the doctor is
not comfortable with this, then that doctor is probably not the
right provider for them. Patients have to go with the doctors
that they trust.
When I get a cold, a fever, or other “red flag” symptoms,
whom should I call and in what order?
In many cases, your primary care provider (PCP) is
a good doctor to make decisions about your care and
help decide whether or not you should call one of your
Dr. Alison Meadows
Melinda Schissel
specialists. If you are clearly having a symptom that is
related to one of your chronic illnesses, call the appropriate
specialist directly.
I have so many doctors! Do I really need a primary care
physician on top of all my specialists?
Yes. The main purpose of a PCP is coordination of care
and prevention. This doctor’s job is to stay on top of “the
rest of you” and do routine screening. They will keep you on
track to get your colonoscopy, mammogram, lipid panel, etc.
Seeing your PCP is a preventive measure to keep the rest
of your body healthy. Patients with chronic diseases need to
remember that they, too, are aging. General health issues will
affect them as well. People with chronic diseases are now
living longer and are acquiring the “normal” types of diseases
and conditions that come with aging. The PCP can also deal
with other issues that can affect the patients’ health and
well-being such as stress, anxiety and depression.
I have a different specialist to treat each of the diseases
that I’m living with. But isn’t it possible my diseases are
interacting? Whom do I ask about this?
Yes, all organ systems interact. This is why you need
to have coordinated medical care. You need to continually
challenge your providers to look at you as a whole person.
This is also why it’s important for you to have one central
coordinator and decision-maker. This person can be a
specialist or your PCP. Whoever this person is has to be
willing and interested in taking the lead. w
By Melinda Schissel, PH Patient
To share your strategies for coordinating care among specialists,
join PH Plus, PHA’s email group for patients with associated
diseases. Visit www.PHAssociation.org/EmailGroups#PHPlus
PATHLIGHT SUMMER 2011 Patient-to-Patient Support Line: 1-800-748-7274
3
B r e a t h o f F r e s h A i r
PHENOMENAL LIVES
U.S. Air Force Flies Mission in Honor of PH Patient
T
his spring, Kari Trapp, 31,
from Rapid City, S.D., taught
hundreds of Americans serving
in Afghanistan about pulmonary
hypertension without ever leaving
home. After being nominated by
her neighbor, Kari was honored in
a U.S. Air Force ceremony on April
16, for embodying courage and
strength following her PH diagnosis
in August 2010. In the ceremony,
Above: The certificate Kari
airmen flew an American flag on a
received with the American
B-1B Lancer bomber on a mission over
flag that flew on a B1B
Lancer.
Right: Kari’s letter
Afghanistan in honor of Kari. Kari says,
from
Michael
Mansfield.
“I just think it’s amazing that hundreds
of Americans on the other side of the
world have heard about the daily battle of life with PH, and
that they’re praying for us and cheering us on.”
In the year following her diagnosis, Kari struggled
with the changes she had to make to accommodate
her symptoms and complex medication regimen. As a
registered nurse and mother of three, she had been
accustomed to working 12-hour shifts and chasing after
her children, but her PH forced her to adapt to a less
active lifestyle. Kari found these adjustments particularly
challenging because she felt so alone. She says, “Where I
live in South Dakota, people don’t know about pulmonary
hypertension. I haven’t met a single person my age who’s
battling the same thing. This ceremony showed me that
people actually care.”
Michael Mansfield, a 22-year-old airman present
at the ceremony, wrote Kari a letter thanking her for
being “an inspiration and a role model” to his squadron.
Since she was diagnosed with PH
as a young adult, Kari said it meant
a lot to her that the letter came
from someone so young who had
already experienced so much. As she
explains, “We’re fighting a daily battle
with our illness, and he’s fighting his
own battle. Everyone’s battling their
own thing. And, as PH patients, we
deserve some honor, too.” w
What’s Trending in Generation Hope
Generation Hope is PHA’s online community for people living with PH in their late teens, 20s and 30s.
• On dealing with family members: “My family sometimes
forgets about my condition and calls me lazy. I just
remind them that every day is a challenge for me and I
may look ‘normal’ but I’m not as I used to be.” ~ Dawn
• On explaining I.V. lines on first dates: “It is hard but if
he runs, it is about him and not me.” ~ Kathleen
• On moving back in with your parents after diagnosis: “I
hate feeling like I don’t have as much freedom anymore,
especially after living on my own for nine years.” ~ Kit
4
• On living life on your own terms: “We live with enough
limitations so my philosophy is that if I CAN do it, if it’s
something I love, I’m going to see if I can find a way to
do it. Sometimes I might take more time, or go about it
in a different way, but most of the time, I get to live my
life normally.” ~ Maddy
Join the conversation:
www.PHAssociation.org/GenerationHope
International Faces of PH: Jas Kalra from India
From India, with love
I
love the monsoons in Bombay where my wife and
I grew up, went to college together, dated, married
and had two lovely kids. But on that dark August day
last year, the torrent seemed to beat my chest as I
stepped outside the doctor’s chamber. In the span of a
week, the diagnosis for my wife’s breathlessness had
shifted from atrial septal defect to primary pulmonary
hypertension. The first reaction was that of disbelief. I
went in for second and third opinions, fervently hoping
that the doctors would dig out the “hole” that the first
echo had erroneously put the cause to. The “no known
cause” line stayed and PPH was the new guest at our
place.
A few words must be said of the medical system
in my country. In about 45 days, we consulted with
13 cardiac/pulmonary specialists at various stages
of diagnosis and in different parts of this big country.
In my opinion, as a former pharma marketer and doc
watcher, 11 seemed capable of a PPH diagnosis in the
first visit with appropriate tests made available to them.
Of the seven who had seen PPH cases earlier (including
a U.S.-based heart/lung transplant surgeon), only five
were thoroughly aware of the mainstream allopathic
medications available in India. Four of those five had
the hope, patience, keenness or control to try out drug
combinations over a period of time and test patient
responsiveness. Two offered patient “dos” and “don’ts.”
The detection and survival rates for PPH have
altered dramatically in the course of the last decade.
However, a lot of the information available is gloomy
and dated. In India, despite the country being a hub
of low-cost pharmaceutical re-engineering, some PH
treatments are unavailable due to the small market size.
The silver lining, however, is that the traditional herb
system (ayurveda), yoga and homeopathy are legitimate
in India and have some meaningful cardio-supportive
supplements, therapies and food advice to offer.
My biggest challenge as a caregiver has been to
put it across to my wife that there is a lot of treatment
we can do based on what patients are already doing
around the world, mainstream or alternative — the
online PH group abounds with tales of courage, ingenuity
and survival. Given the quantum of research, the
promise of a cure is real. I tell her that I believe we will
together grow old, fat and grumpy and that, one day, we
will have grandchildren to see.
When times get tough and it feels like relatives,
help and luck have deserted us, we have learned to
soldier on in a way akin to what the noted poet Tagore
prescribed: “If you must, walk alone.”
A final note. Love bonds. It heals. It cures. I see
the same glint in my wife’s eyes today that I saw every
single day when we dated. The delight in getting lost on
a long drive is back, too. Except, now, we always have
two noisy and mostly hungry kids in the rear.
PHENOMENAL LIVES
When we asked Jas to share his perspective as a
PH caregiver, he said, “I will. Gladly. Anything for PH.” It’s
the same feeling that so many spouses of PH patients
feel the world over. If your better half is a PH patient, we
think you’ll find that you share a lot in common with Jas!
international
news
Doctor notes from leading heart hospitals in India
Dr. Ravi Kishore, Senior Cardiologist, Narayana
Hrudalaya, Bangalore:
The key issue in India is that the diagnostic
modalities are restricted to urban centers, hence a vast
number of patients remain undiagnosed. There is also
a perception among a majority of treating physicians
and cardiologists that the diagnosis is a death knell for
the patients as there are very limited treatment options
available. Newer drugs are expensive. Other drugs, if
available, also come at a huge price. And heart-lung
transplant may not see the light of the day in the near
future.
Dr. Rahul Mehrotra, Consultant Cardiologist, Medanta
Heart Institute, Gurgaon (NCR):
The disease is as prevalent in India as in other
parts of the world. The management of the disease is
demanding for the patient and the caregivers — a key
aspect is inclusion of counsel regarding drugs, changes in
lifestyle, marriage and family life.
Dr. Geetha Krishnan, Senior Ayurveda Consultant,
Medanta Heart Institute, Gurgaon (NCR):
In management of PAH, the general approach one
takes is to create “vata anulomanata,” which in simple
terms means “channeling the energy.” Panchakarma
(purifying) procedures such as vasti, mridu virechanam
and pratimarsha nasya are found to offer good support
when used judiciously in the course of the disease. w
By Jas Kalra, PH Caregiver
Read the full article — with more doctor notes — online
at www.PHAssociation.org/PHInternational.
5
PHENOMENAL LIVES
Finding Insurance Cov e r a g e D u r i n g D i f f i c u l t T i m e s :
How One Patient Tapp e d i n t o C o m m u n i t y R e s o u r c e s
6
M
y journey with PH began in
November 2005. I had just
turned 27 and was trying to
start a new life with my husband as
a newlywed. I was working full time
as a case manager for children with
special needs. It was a blessing that
my employer paid 100 percent of
my insurance premium. I still had to
pay a $1,000 deductible, but with a
diagnosis of PH, that deductible was
met almost immediately! Life with PH
was good. I had a supportive family
and co-workers, great insurance
benefits and a rewarding career —
what could possibly go wrong?
However, this house of cards
tumbled down. On May 20, 2010,
(a day I will never forget), I went into work with tears
in my eyes. My PH had progressed, and it was very
difficult to work a 35-hour week. I had a doctor’s note
in my hand stating I was no longer able to work. I went
into work knowing I needed to attend an important
business meeting. At the meeting we were informed
that our employer was having financial difficulties and,
as a result, would be cutting half of the staff. I was
one of the “lucky” staff, remaining on the payroll but
still losing insurance benefits beginning June 1. I gave
them my doctor’s note about my worsened condition
and informed them I would be applying for short-term
disability benefits.
I returned home shell-shocked, not expecting I
would be losing all my benefits in an instant. I began to
wonder how I, a PHer, could survive without insurance
and if it would be possible to get insurance with this
pre-existing condition. I immediately went to Maine’s
Department of Health and Human Services and applied
for MaineCare. Unfortunately, I was denied due to my
household assets. (Advice: Don’t buy a timeshare.)
I did a Google search for “health insurance in
Maine” and received more than 9 million hits! I tried to
sift through the information, but began to notice that
the websites were outdated and filled with inaccurate
contact information. I didn’t know where to go next. It
was so overwhelming, and I didn’t get anywhere. I was
without insurance for two months and the bills were
racking up.
Finally, I attended a PH support
group meeting in July 2010, and when
Jeannette Morrill, PH patient and support
group leader, asked how I was doing, I
unleashed my burdens. Everyone at the
meeting said, “Don’t forget about the PHA
website; it has a lot of good information.”
Liz Mahoney, an Accredo representative,
really went out of her way to write down
and send me information by mail. She
also told me that Caring Voice Coalition
(CVC) could possibly provide healthcare
premium assistance.
I contacted PHA and spoke to
Margaret Beardsworth, the Insurance
Program Manager, and she also informed
me about CVC and Healthcare.gov.
I called CVC and talked to someone,
who also sent me information for Healthcare.gov.
We reviewed the plans on the website together and
discussed the best possible plan for me. CVC then
participated in a conference call with my potential
insurance provider to address plan questions. Given my
budget, the cost for the premiums was crushing and out
of my price range; I feared I would not be able to afford
it! However, CVC staff reminded me that I could apply for
assistance with insurance premiums.
The process for CVC’s application was very easy
and the turnaround time was impressive. I was notified
that CVC would reimburse $350 toward my premium!
After reimbursement, the cost was within my budget.
Each month I have to send in a copy of my premium
invoice, a copy of my cleared payment and the shipping
invoice for my TracleerTM.
My biggest words of advice for all those reading my
story is don’t do it alone and don’t wait to make the
call for assistance! There are many organizations (like
PHA and CVC) that want to help you. You just need to
ask. w
By Hada Monahan, PH Patient
Contact Margaret Beardsworth, PHA’s Insurance Program
Manager, at [email protected] or 303-565-3004
x754. Visit www.PHAssociation.org/Patients/Insurance
to access PHA’s online insurance resources. Contact the
Caring Voice Coalition at CaringVoice.org or 888-267-1440.
The Pulmonary Hypertension Association Quick Resource Guide
Got questions? Get answers.
About PH: An Online Guide – Learn the basics about PH, diagnosis and
treatment. www.PHAssociation.org/Patients/AboutPH
Find a PH Specialist – Look here for a list of PH-treating physicians from
around the world. www.PHAssociation.org/Patients/FindaDoctor
Pulmonary Hypertension: A Patient’s Survival Guide –
Our comprehensive guide to understanding and coping with PH. Order
your copy online at www.PHAssociation.org/SurvivalGuide
Tips for Emergencies –
www.PHAssociation.org/Patients/EmergencySituations
PHA Classroom – A place to participate in live e-learning events or watch
recordings on your own time. www.PHAssociation.org/Classroom
Insurance Guide – PHA’s insurance guide answers questions about
coverage and benefits, including disability, Medicare, Medicaid, Social
Security and unemployment. www.PHAssociation.org/Patients/Insurance
PHA’s Patient Resources List – A handy guide to organizations that can
offer you legal assistance, financial help, and targeted information. Visit
www.PHAssociation.org/Patients/Resources
Access PHA’s caregiver resources at www.PHAssociation.org/Caregivers
Habla español? www.PHAssociation.org/Espanol
Stay in the loop.
PHANews – This free biweekly email newsletter brings the latest news
about PH and PHA to your inbox. www.PHAssociation.org/PHANews
Pathlight – PHA’s quarterly print newsletter for members and donors
provides medical updates, tips on living with PH, support group news and
much more. Visit www.PHAssociation.org/Pathlight for back issues.
Looking to help? We’re looking for you.
The 435 Campaign – Reach out to Members of Congress to advocate for
PH research and education. Request information and sample letters at
www.PHAssociation.org/Advocacy
Our Journeys – Submit your story online to inspire others and help raise
PH awareness. www.PHAssociation.org/OurJourneys
PHAware Campaign – Contact your local media outlets to spread the
word about PH! PHA provides a step-by-step Media Guide, press kits and
an email group to help you connect with other media advocates.
www.PHAssociation.org/PHAware
PATHLIGHT SUMMER 2011 Connect from home
Patient-to-Patient Support Line:
800-748-7274
The Support Line is answered by a group of
trained volunteer patients who are there for
anyone who needs to talk about pulmonary
hypertension.
Online
Our discussion boards, email groups and
chats help you instantly connect with other
patients and family members. www.PHAssociation.org/ConnectOnline
Find a personal patient or caregiver
mentor at www.PHAssociation.org/Mentors
Connect face-to-face
Support Groups
Join one of our 230+ support groups
nationwide to connect with people who
understand what it’s like to live with PH. Find
support groups in your area at www.PHAssociation.org/LocalSupportGroups
Conference and Patient Education Programs
PHA’s International Conference brings
together more than 1,000 patients,
caregivers, medical professionals and
other friends of PHA every two years to
share information on the latest research,
treatments and coping with PH. To learn
more, visit www.PHAssociation.org/
Conference
PHA also hosts regional patient
education conferences throughout the year.
Learn more at www.PHAssociation.org/
OntheRoad
Special Events and More!
Attend an event near you to meet patients
and support PHA: www.PHAssociation.org/Events
Join our community of hope
Become a member to receive Pathlight,
a discount on Pulmonary Hypertension: A
Patient’s Survival Guide and much more.
Visit www.PHAssociation.org/Join
Patient-to-Patient Support Line: 1-800-748-7274
C o n v e r s a t i o n s i n C a r e g i v i n g
PHENOMENAL LIVES
Chronic Kids, Constant Hope: A Book for Parents of Chronically Ill Children
B
efore my daughter was born, I
Two sisters and mothers of
loved to read. When she was
chronically-ill children, Elizabeth
7 months old, she began to
Hoekstra and Mary Bradford, wrote this
experience some medical issues.
together. They have interwoven tales
Like many parents, I became a
of their own personal experiences with
consumer of “medical literature”
those of other families. They cover a
— reading everything. I wanted to
variety of very relevant topics, such as
find that one tidbit that would make
“Releasing Guilt and Blame,” “Educating
“the difference.” When she was 13
Yourself” and “When Friends Say Hurtful
Lisa (left) with her daughter
years old, we added a diagnosis of
Things ... and They Will.” Their real
“pulmonary hypertension” to our vocabulary.
experiences finally added some “normalcy” to how I feel
My husband and I were overwhelmed, frightened,
as a parent — along with PHA’s parents email group and
angry, worried and grieving. How could something so
two family weekends at a camp.
terrible have happened? Her earlier diagnoses were
To be sure that no one is misled, you should
problematic — uncontrolled epilepsy and a developmental
also know that this book is written from a Christian
delay — but this was different. Even though we had the
perspective. It includes scriptural references and Biblical
support of our parents and a few close friends, we felt very comparisons. The authors do not try to evangelize, but
isolated and alone and weren’t quite sure how to process
offer the perspective of parents who have grown to rely
it all. We found PHA’s website shortly after diagnosis,
upon faith to aid them in their situations. For me, this was
but that was little comfort at the time when we were
a tremendous comfort when I also read chapters titled
struggling to grasp everything involved with our situation.
“When You’re Mad at God,” “‘Mommy, Why?’ and Other
Now, almost four years later, our daughter is stable, which Hard Questions” and “Expecting Joy.”
is far more than her doctors expected. We are incredibly
In the end, this book has become one of my
grateful, but our lives as parents of a chronically ill child
favorites. When we are having a rough day, I’ve pulled
will never be “normal” compared with many others’ lives.
it out to re-read a section or chapter. When I’ve been
A few months ago, I made a decision to try and
worried, I’ve used it to find appropriate scripture to bolster
reclaim a little of my “pre-child” life. I was browsing
my spirit. And when my daughter gets a good report, we
through a catalog when I saw a picture and snippet about
have been truly happy and able to focus on that and not
the book Chronic Kids, Constant Hope (Crossway Books &
the “what-ifs” of PH. I hope you find that it is a practical
Bibles, 2000). I started to pass over it, but then I saw the
(and uplifting) experience for you as well. w
subtitle: “Help and Encouragement for Parents of Children
By Lisa Garnett, Parent of a Child with PH
with Chronic Conditions.” I was “hooked.” I ordered it.
C aregiver S hout -O ut ! Jennifer Grote honors her husband and caregiver Chad Grote.
I
would like to acknowledge my husband of almost eight years, Chad
Grote. He is my rock. I always knew he was a special guy, but
through the years of me being sick with lupus and then last May with
the diagnosis of PH, he has really stepped up. He does so much for
me around the house and for our little girl. He is so patient with me
and never pushy or angry that I need so much help some days. If he
gets angry, it is because he can’t heal me. Thanks for the opportunity
to recognize our caregivers because they mean so much to us.
As we go to press, PHA is saddened to learn that Jennifer Grote lost her
battle with PH in June.
For a chance to express gratitude to a loved one in Pathlight, email submissions to [email protected].
8
Caregiver Mentor Spotlight: Laura O’Donnell
What advice do you have for other families living with
this disease?
How long has your family been living with PH?
I have been a PH caregiver for 10 years. My
daughter Shannon was diagnosed with PH as a
kindergartner, in 2001. Somewhere along the way my
husband and I got involved with a support group. Now
we run one for other families of children with PH in the
Boston area.
Why should someone email a PHA Mentor?
Email me if you are looking for hope. My family’s
experiences can make people who are new to all of this
start to feel a little better. This is how I show patients
and caregivers the love when I talk to them. We point
to our daughter and say, “This is how it could be.” My
marriage is stronger than it was when our daughter
got sick. We used to have fun all the time. Now I’m
tired more often, but we’ve found ways to improve our
marriage. We have date nights.
When you feel more comfortable with the day-to-day
of life with PH, things will get better. We let Shannon be
independent. We let her have sleepovers, and we let her
go to the mall. Now I know the difference between not
having confidence and having the confidence it takes to
live your life. You can’t give up just because you’ve heard
the words pulmonary hypertension, and PHA Mentors can
help you figure that out.
Your quality of life is important. Keep up with your
relationships. Keep busy. Go do things. You can’t be
afraid to live. Go for a walk; go to the mall; do something.
I was paranoid for a little while, and I kept Shannon in
a bubble. But eventually we learned what she could do
and what she couldn’t do on her own. Eventually, I had
to find small ways to let go. That has kept me sane. I go
out with my friends and have coffee. I work two nights
a week at Build-a-Bear. Everyone needs some degree
of independence, financial or otherwise. You can’t do
laundry and clean every single day. Whether you’re a
patient or a caregiver, don’t let PH take over your life
completely. Go find something of your own that you enjoy.
PHENOMENAL LIVES
PHA
But I can tell you what I do, what my husband does, what
my daughter does to deal with the meds, the doctors, all
of it.
Mentors are patients
and caregivers from all
over the world, standing by to
help patients, caregivers and
parents through one-on-one,
email-based support. Laura
O’Donnell is one of those
mentors, and she shares a
little about herself now.
Email Laura at [email protected], or connect
with another PHA Mentor by gender, age, associated
disease or topic of interest at PHA’s website:
www.PHAssociation.org/Mentors w
Family members and friends,
you are not alone.
Email a caregiver mentor for support.
What are some of the most common questions you hear
from PH patients and caregivers?
Oh, I hear all sorts of questions. They want to know
why this is happening to them. They want to know if they
can travel. A lot of families want to know whether PH kids
can swim. In response to all these questions, I tell them
about my family’s experiences. To the parents, I say, my
daughter’s different from your son or daughter. If you’re
a patient, I can’t tell you what’s going to happen to you.
Patient and caregiver mentors
are ready to help at
www.PHAssociation.org/Mentors
9
PHA Babies: Meet the Growing PHA Family
PHA
PHENOMENAL LIVES
is delighted to introduce you to Brady, Ryan and
Connor. Their mothers are part of our team at the
PHA office in Silver Spring, Md., and as you can see, our
team is growing! w
Meet Brady David Lucadamo
Doreen Lucadamo, PHA’s Director of Meetings and
Conference Planning, and her husband Dave welcomed
Brady into the world on Sept. 23, 2010. Brady is already
a member of the Baltimore Orioles’ and Ravens’ Kids
Clubs, and he is an extremely happy baby. “I love every
minute of being his mom, even when I don’t get much
sleep,” Doreen says.
Doreen sees her work at PHA
as a personal mission. As she
explains, “The day before Brady
was born, my mother, a PH patient,
went into the hospital in Florida
complaining of pain. She didn’t
know if she would live to ever
meet her only grandchild. Since
then, she has been in and out
of both the hospital and hospice
and has had the chance to spend
quality time with Brady, including
a visit right after he was born, a
Clockwise from left: Doreen’s
visit at Christmas and another in
mom Roberta, Dave, Doreen and
March.”
Brady in December 2010
Meet Ryan Xavier Thomas
Keisha Thomas, PHA’s Associate Director of
Database, her husband John and son Jayden welcomed
a second son on March 14, 2011. Ryan’s middle name,
Xavier, is from a character in the X-Men comics, and he
loves the song “Itsy Bitsy Spider” as sung by his big
brother Jayden. It calms him down. Jayden loves being a
big brother. “I often have to
remind him not to squish
Ryan in his enthusiasm,”
Keisha says.
Keisha has been
with PHA since October
2006. “Three years ago I
was the first PHA staffer
to have a baby, and now
I can add another person
to the ranks!” she says.
Keisha, Ryan and John
Meet Connor Kevin
McCabe
Jillian McCabe, PHA’s Associate Director of
Development, and her husband Dave welcomed Connor
on March 14, 2011. Connor loves going on walks and
having lunch at his dad’s restaurant. “You always hear
how being a parent changes your life, and it is true,”
Jillian says. “I fall more
in love with Connor each
day.”
Jillian has been
with PHA for more than
three years. “The people
are the thing I love most
about PHA — both the
staff and the members,”
she says. “PHA brings
together an amazing
group of people who
work really hard to beat
this disease. Each day is
Jillian, Connor and Dave
inspiring.”
Congratulations, Doreen, Keisha and Jillian!
Online Videos Offer New Patients Education and Hope in Three Minutes or Less
PHA
recently launched a series of online educational
videos featuring PH patients and medical
professionals. These videos provide newly diagnosed
patients and family members with a snapshot of what they
need to know to take the first steps after diagnosis. Visit
PHA’s website to watch videos on the following topics:
Understanding PH • Diagnosing PH •
Finding a PH Medical Team • Treating PH •
Lessons from a Long-term Survivor •
Living with PH in your 20s and 30s
10
Find these videos and more at
www.PHAssociation.org/Patients/NewlyDiagnosed
A Rich History: The Survival Guide from Start to New Fourth Edition
PHENOMENAL LIVES
F
irst published in 1998, Pulmonary
thanks to the time and expertise of a
Hypertension: A Patient’s Survival
dedicated team of PH community volunteers.
Guide is the brainchild of author Gail
The Survival Guide team’s most recent
Boyer Hayes, a writer and PH patient
efforts are debuting this summer in the form
who has lived with the disease for more
of the fourth edition of the Survival Guide.
than 25 years. As a patient looking for
In addition to a totally redesigned cover
answers about research, treatment
and interior, the fourth edition features a
and how to make day-to-day life easier
new chapter called “Caregiving” and five
with PH, Gail found that there were no
updated chapters including: “How Do I Know
patient-friendly resources that addressed
I’ve Really Got PH,” “PH Drugs,” “Surgical
her needs — just complicated medical
Treatments,” “Children and PH,” and
texts. So she put her personal talents
“Tedious Paperwork and Legal Matters.” To
Fourth Edition Cover
to use and wrote the book herself. With
purchase your copy, visit the assistance of Dr. Bruce Brundage, Gail’s untiring
www.PHAssociation.org/OrderSurvivalGuide or call 301research and writing efforts produced the first three
565-3004.
complete editions of the book, providing information,
Thank you to all the patients, caregivers and
answers, comfort and hope to her fellow members of the
medical professionals who assisted with the publication
PH community.
of the fourth edition of the Survival Guide! w
As the scope of keeping the Survival Guide
up-to-date grew (thanks to the rapid advancement
of the medical understanding of PH), Gail called in
reinforcements to help maintain the guide as a relevant
and accurate resource for PH patients in the United
States and around the world. Under the guidance of
Dr. Ron Oudiz, the Survival Guide’s medical editor, this
resource is now updated annually by a volunteer writing
and reviewing team of more than 25 patients, caregivers
and medical professionals. The book that first grew out
of one patient’s need continues to be a valued resource,
Original Cover
Third Edition Cover
PHA Board of Trustees Welcomes Two New Members
PHA welcomes two new members to our Board of Trustees. The Board serves in a governance and oversight capacity, ensuring that
PHA’s programs meet the needs of all our constituencies. Visit www.PHAssociation.org/BoardOfTrustees to meet all Board members.
Colleen Brunetti, Generation Hope Advisory Board
Member, Online College Instructor and Owner of “Little
Hands, Big Ideas”
olleen was diagnosed with PH in 2008
shortly after the birth of her son. Since
then she has become incredibly involved
in the young adult patient community.
She joined the Generation Hope Advisory
Board and takes part in welcoming
new members to the group, as well as
exchanging ideas and information. She also recently
wrote a Pathlight article (Spring 2011), “Helping Your
Child Cope with Your Illness,” as a resource for other
parents dealing with the disease.
C
Diane Ramirez, Advocacy Chair, North Carolina
Support Group
iane joins PHA’s Board as a
long-term PH survivor, having
lived with the disease for more
than 20 years. At the time of her
diagnosis, no treatments existed.
Instead of giving up hope, Diane
decided to raise awareness of the
disease by talking to the media. Over the years, she
has spoken to news stations, representatives in
the House and Senate and most recently the New
York Times. She also encourages her North Carolina
Support Group to promote awareness of PH.
PATHLIGHT SUMMER 2011 D
11
Our Journeys
PHENOMENAL LIVES
Our Journeys are stories that bring the PH community together and shine as beacons for those who
feel isolated and alone with this disease. Visit www.PHAssociation.org/OurJourneys to read the
following two stories in their entirety, browse more than 200 Journeys or submit your own.
12
Get Cathed with a Friend … or Your Big Brother
I
s there anything higher on a PH
patient’s DISLIKE list than the
dreaded right-heart catheterization? I
know it’s my least favorite. My brother
John hates them, too. John was
diagnosed with pulmonary hypertension
in 1995, and I was diagnosed in
1998. Our mom lost her sister Josie
to PH in 1963, so we have the genetic
thing going in our family. I’ve lost
count now but, counting the marks on
my neck, I think I’m up to 12 or 13
catheterizations and John’s had his fair
share, too. Since we were both due for
a catheterization, I suggested we go
together. I figured we could share the long ride from Long
Island, N.Y., into Manhattan, and our spouses could keep
each other company while we were doing our thing.
We got to the hospital and made our way up to
the catheterization lab. I had to have an echocardiogram
done first (John had his done the week before), so big
brother settled in and got on the schedule first. Darn it!
I wanted to go first! After the echo, I waited outside the
lab for someone to come and get me when I got my first
text message from him. It read, “Be brave today. Don’t
cry. Preserve the family’s good name!” Nice. You see,
my fellow PHers, in those first few years after diagnosis,
I used to cry through the whole catheterization. I’m sure
it was a nervous reaction/tension reliever/stress thing.
The doctor also had a very hard time getting my arterial
line in, so I cried a lot, but that was more than 10 years
ago. I texted him back with a sharp retort that cannot be
repeated here and gave him a suggestion to keep himself
busy. I also told him I hadn’t cried in years.
One of the wonderful staff members of New York
Presbyterian Cardiac Catheterization Laboratory came
to get me and settled me into a cubicle with a door and
everything. Ha! Victory! My brother was in a curtained off
area two sections away. After I changed into my highfashion hospital gown, I made sure to saunter over to
his vicinity to gloat about my superior accommodations.
Score one point for the little sister. When the nurses came
to get my intravenous therapy going, I chatted them up.
by Joanne Sperando-Schmidt
“Listen,” I told them, “that’s my brother John
in the curtain two area, and he is in desperate
need of a prostate exam. Can we get that
ordered for him right away?” They giggled, but
told me they couldn’t address that request in
the catheterization lab. Drat.
Big brother got to go in first and smiled
broadly as they wheeled him past my door.
I wished him luck and told him to enjoy
himself. I settled in for the wait and tried
to lay back and enjoy the relaxer pill I was
given. Yes, even after 12 years of PH and
13 catheterizations, it’s still a nerve-wracking
experience, but we know what to expect and
we hope for the best. I said a little prayer that
John’s catheterization would go well and we’d hear good
news about his numbers.
He was done fairly quickly, but of course our fun and
games were far from over. By this time, I was feeling very
dreamy (thank you, Valium) and relaxed. “Here comes your
bro,” my husband told me. As they wheeled John past my
door, he decided to pantomime a seizure of sorts. His
performance was brilliant, complete with drooling, shaking
and nonsensical babbling. He had the nurses laughing.
“Very funny, John! Hilarious!” I called out. “Don’t shame
the family,” he replied. I tried one more time to get the
nurses to give John that much-needed prostate exam, but
they weren’t buying it.
Thankfully, my catheterization went great and we
both got good news on our pressures. We decided to
celebrate and hit our favorite restaurant for dinner on the
way home. Yes, brother and sister: our relationship will
always be one based on nuggies, merciless teasing and
fun childhood memories. In all seriousness, I know that
I’m incredibly lucky to have my brother. He went through
everything first and has prepared me for all the ups and
downs of being a PH patient. We compare notes all the
time and support each other through this journey called
pulmonary hypertension. He’s the best.
So the next time you’re getting cathed, I recommend
bringing a friend (or a relative). By the way, did I mention
that John is 50 and I’m 46? Bet you thought we were a lot
younger. w
Our Journeys
Gall Bladder Leads Doctors to PH Diagnosis
me to Dr. Vallerie McLaughlin, a worldrenowned PH specialist at U of M. A rightheart catheterization and a six-minute
walk test at the beginning of August
confirmed the diagnosis.
It was difficult to make peace
with being told that my condition was
incurable, and that while the damage
to my heart from PH was reversible, the
damage to my lungs from the scleroderma
was not. Over the past year I have had
plenty of time to think about the phrase,
“life-changing disease.”
By all accounts I have responded well to my
treatments, but it certainly seems like it has been a long
road to get to this point. As a result of my doctors putting
me on permanent disability, I’ve been away from my job
as a newspaper editor for more than a year. I’ve had to
watch out the window while my wife and elderly in-laws
do all the work in the yard and garden that were once my
domain. I’ve had to carefully choreograph simple things
like a trip to the grocery store.
On the other hand, I also know I have made great
progress and have come to realize that the things I have
lost certainly don’t compare to the many things I still
have. Like all chronic disease sufferers, I have good
days and bad days, but I’m thrilled to say the bad days
are now few and far between. A year ago I was pretty
much stuck in a chair, watching TV and waiting for my
next doctor appointment or medical test — and worse,
wondering why this happened to me.
Now I’m able to drive, run quick errands, make
short shopping trips, do light housework, resume cooking
and baking, and even get out in the garden for short
periods. This may not sound like much, but it helps me
feel more “normal” and less like a liability or burden to
those around me. I simply have to be careful not to do
too much in one day, and learning what my new limits are
has been an adventure.
This has also reminded me to be more grateful
for the new perspective on life that I’ve developed. I’m
grateful to be treated by a world-class team of doctors
who are only 40 miles from my home; I’m grateful that my
only real “handicap” is an inability to breathe normally;
and I’m forever grateful for the love and prayers of my
friends and family. I’m certain that I couldn’t have made it
this far without them. w
PHENOMENAL LIVES
I
t sounds funny to say a gall bladder
attack saved my life, but it’s true.
Had it not been for gall bladder
trouble in late April last year I would
not have found out that pulmonary
hypertension — compounded by
scleroderma in my lungs — was the
condition that was making me short of
breath and potentially cutting short my life.
My doctors tell me this had probably
been developing for a number of years. It
was so gradual that I really didn’t notice it;
like many undiagnosed PH patients I had
attributed my fatigue and difficulty breathing to getting
older and being overweight.
In any case, it became clear during the winter and
spring of 2010 that something very wrong was happening
in my heart and lungs. I was unable to climb even a
single flight of stairs without stopping to catch my breath.
Because of this, I had made an appointment with
my regular doctor to find out what was going wrong, but
fate interrupted what would have likely been months of
medical tests and visits to various specialists before
coming up with an answer.
Although I’d never had trouble with it before, I
suddenly began showing symptoms of a gall bladder
attack in late April. This coincided with the doctor’s
appointment I had already made, and he determined I
needed surgery to remove it the next day.
During the surgery the oxygen level in my blood and
my blood pressure both suddenly dropped dangerously
low. The surgery was stopped immediately, and I was
airlifted to St. Joseph Mercy Hospital in Ann Arbor, where
I spent more than a week in the intensive care unit.
That first night was the worst. I was in a coma, and
doctors told my wife they weren’t sure I would make it
until the morning. I made a remarkable turnaround in the
middle of the night, however, and I fought hard to do what
was needed to leave the hospital as soon as possible.
That turned out to be days ahead of when the
doctors thought, and I was sent home after being set up
with oxygen 24 hours a day and a fistful of appointments
for pulmonary specialists and tests.
Dr. Kristine Phillips, a rheumatologist at Ann
Arbor’s University of Michigan Hospital, diagnosed the
scleroderma in my lungs, and one of the pulmonary
doctors finally suggested PH as a diagnosis and sent
by Edward Freundl
13
H e a l t h M a t t e r s
A s k a P H Sp e c i a l i s t
Q:
each issue, Pathlight
features a question from
our PH community and
its answer from a PH
specialist. Send us your
questions, keeping in mind
doctors can only address
general topics that are
not specific to individuals.
Send submissions
to PHA at AskaDoc@
PHAssociation.org or call
301-565-3004 x770.
What is the connection between sleep
apnea and PH?
A:
Obstructive sleep apnea (OSA) has been
identified as a significant cause of and/
or contributor to cardiovascular disease.
OSA has been shown to increase the risk for
hypertension, pulmonary vascular disease,
ischemic heart disease, stroke, congestive
heart failure, and arrhythmias. The true
relationship remains controversial despite the
growing body of evidence that links OSA to
the development of cardiovascular disease.
Many risk factors for OSA are also known risk
factors for cardiovascular disease, such as
age, male gender, obesity, diabetes mellitus
and hypertension. Therefore, it is difficult to
prove whether OSA independently causes
cardiovascular disease.
Effect of Sleep-Disordered Breathing on Body
Episodes of sleep-disordered breathing
cause blood vessel changes that can cause
and contribute to cardiovascular disease.
The adverse effects that OSA imposes on
cardiovascular function are thought to arise
from recurrent cycles of not breathing,
intermittent hypoxia and the resulting
arousals. This cycle of nocturnal desaturation
results in an increase in sympathetic tone,
impaired nitric oxide synthesis, endothelial
dysfunction and ultimately leads to vascular
and cardiac dysfunction, atherosclerosis and
hypertension.
oxygen impairs nitric oxide synthesis and
causes vascular remodeling which can lead
to the development of pulmonary vascular
disease. However, whether OSA independently
causes clinically significant pulmonary
hypertension remains controversial. Thus, the
current ACCP guidelines do not recommend
evaluating patients with OSA for pulmonary
hypertension unless it is clinically suspected.
However, patients with pulmonary arterial
hypertension should be evaluated for OSA.
Treatment
CPAP (continuous positive airway
pressure) has been shown to be effective in
patients with heart failure. Controlled trials
have shown that treatment of OSA with CPAP
is associated with significant improvements
in cardiac function, sympathetic activity and
quality of life. In the Canadian Positive Airway
Pressure study, CPAP improved nocturnal
oxygenation, increased left ventricular
function, lowered norepinephrine levels and
improved functional capacity among patients
with sleep apnea and heart failure. Several
recent studies have shown reductions in
pulmonary artery pressure in patients with
OSA after nocturnal CPAP treatment. w
Answer provided by David Pham, MD, FCCP,
Pulmonary Hypertension Specialist, Pulmonary &
Critical Care, Lung Care Center, Fountain Valley,
Calif.
Pulmonary Hypertension
The 2004 American College of Chest
Physicians (ACCP) consensus panel found
that pulmonary hypertension occurred in 17
percent to 53 percent of individuals with OSA,
whereas a review from Johns Hopkins found
that 82 percent of patients with pulmonary
arterial hypertension had underlying sleepdisordered breathing. The nocturnal drop in
14
m e d i c a l p r o f e s s i o n a l s
1
Continuing Education Sessions
The 2011 PH Professional Network Symposium
Inspiring Hope: New Directions in PAH boasts
nearly 30 educational sessions for allied health
professionals with the opportunity to receive a
maximum of 11.25 contact hours of CE/CME
credit! New educational programming for 2011
includes a virtual catheterization presentation,
expanded pediatric programming and sessions for
pharmacists.
4
Updates on Research — from Peers!
Attendees can learn about the new research their
colleagues are working on in the field of PH at the
2011 PH Professional Network Symposium Poster
Hall. Interested medical professionals can present
their own research for display and highlight the work
their institution is doing!
“The PHPN Symposium has given my nurses
the chance to present at a professional meeting
without the stress of giving a ‘talk.’ It is a great
chance to network with peers, and I hope all
attendees consider submitting an abstract!”
~ Laura Savage, RN, MSN, PCCN,
VCU Health System
5
FREE Registration!
The 2011 PH Professional Network Symposium
offers FREE* registration to the first 300 allied
health professionals registered. With up to 11.25
CE/CME credits available, this is a great value for
any allied health professional! These registrations
are reserved on a first come, first served basis so
don’t delay — register now.
“The Symposium was rejuvenating and inspiring.
The sessions were literature-based but also focused
on ‘real world’ applications, addressing the hurdles
we face as PH practitioners on a daily basis.”
~ Jennifer Priziola, PharmD, BCPS,
William Beaumont Hospital
2
Networking with Colleagues — Plenty of It!
Symposium will give
attendees ample time to
network with fellow PH
medical professionals,
including planned
networking receptions,
the “Who’s Who?”
contact book and the PH
Professional Network
(PHPN) Mentor program.
“The Symposium gave me the opportunity to
network with PH professionals from all over the
country. Sharing stories, experiences and ideas
was inspiring, energizing and fun! I’ve remained
in contact with colleagues who I feel are not only
great resources but friends!”
~ Frances Rogers, CRNP,
Hospital of the University of Pennsylvania
3
Advocacy for PH on Capitol Hill
The Symposium offers allied health professionals
the unique opportunity to meet face-to-face with
Members of Congress and educate them about
pulmonary hypertension and the Tom Lantos
Pulmonary Hypertension Research and Education Act
of 2011. Learn more on p. 16
HEALTH MATTERS
T o p Five Reasons for Allie d H e a l t h P r o f e s s i o n a l s
t o Attend the 2011 PH Pro f e s s i o n a l N e t w o r k S y m p o s i u m
*A $50 deposit is required to reserve a space and
will be refunded after the Symposium. However,
cancellations received after Sept. 16 and “no shows”
are not eligible for refunds. In order to receive free
registration, attendee must be a paid member
of PH Professional Network. Membership in PH
Professional Network is $35 annually.
PH Professional Network Symposium will take place
Sept. 22-24, 2011, in Arlington, Va. Visit
www.PHAssociation.org/PHPN/Symposium
for more information or to register.
15
HEALTH MATTERS
Allied Health Professionals,
Represent Your Patients on Capitol Hill!
L
egislative staff seldom get visits from medical
professionals who are there to represent their
patients. The PH community is different.
In September, more than 100 nurses and other
allied health professionals from the PH community will
visit Capitol Hill to ask their Members of Congress to
help find a cure for PH by co-sponsoring the Tom Lantos
PH Research and Education Act of 2011.
Please share this information with your PH medical
professionals!
PH Professional Network Advocacy Day
Thursday, Sept. 22, 2011
11:00 a.m. — 5:30 p.m.
Training, transportation and box lunch provided
• Make the most of your trip to the D.C. area for the PH Professional
Network Symposium by arriving in time for Advocacy Day.
• Share your unique perspective on PH — your own story plus the
stories of your patients.
• Provide Members of Congress first-hand information about the many ways your work
would benefit from PH research.
• Make your voice heard, support your patients and deliver a critical message on behalf of
the entire PH community!
Learn more and register: www.PHAssociation.org/PHPN/Symposium/AdvocacyDay
New Pediatric Courses Available on PHA Online University
PHA
representatives recently attended
the Annual International Neonatal
and Childhood Pulmonary Vascular Disease
Conference, a conference highlighting the
newest advances in the field of pediatric
pulmonary hypertension. We recorded many of
the sessions, and the recordings are becoming
available on a rolling basis for continuing
medical education credit on PHA Online
University (www.PHAOnlineUniv.org).
This conference featured a wide array
of topics — including transitioning pediatric
patients to adult care and examining the
genetics of PH — presented by leading
clinicians and researchers in the field. These
recordings present the most up-to-date
information about the etiology and treatment of
pulmonary hypertension.
Patients, tell your medical professionals
about these important new recordings. w
16
Here’s a sampling of the recorded sessions:
• Introducing Intrapulmonary Arteriovenous Shunt Pathways,
Dr. Marlowe Eldridge, University of Wisconsin School of
Medicine and Public Health, Madison, Wis., USA
• Endothelial Progentior Cells and Chronic Neonatal
Pulmonary Hypertension, Dr. Bernard Thébaud,
University of Alberta, Edmonton, Alberta, Canada
• Evaluation and Diagnosis of Protracted Neonatal and
Respiratory Failure and Pulmonary Hypertension, Dr.
Steven Archer, University of Chicago, Chicago, Ill., USA
• Effects of Elevated FiO2 on Vascular Structure and
Reactivity, Dr. Robin Steinhorn, Northwestern University
School of Medicine, Chicago, Ill., USA
Log onto the www.PHAOnlineUniv.org to view
these presentations and more!
r e s e a r c h c o r n e r
Pulmonary Hypertension in Sickle Cell Disease: It’s Complicated
How common and what is the impact of pulmonary
hypertension in sickle cell disease?
Multiple studies have demonstrated that
approximately 30 percent of patients with SCD have an
elevated estimated pulmonary artery systolic pressure
assessed by echocardiogram or abnormal elevations in
brain natriuretic peptide levels, a hormone released by
the heart ventricles in response to pressure or volume
stress. More importantly, patients with these abnormal
parameters are five to 10 times more likely to die,
suggesting that these biomarkers are useful to identify a
group of patients with SCD at a very high risk of death.
It is important to point out that not all patients with
an elevated estimated pulmonary artery systolic pressure
will have PH. It is estimated that 6 percent to 10 percent
of patients with SCD have right heart catheterizationproven PH. Interestingly, when compared to patients
with traditional forms of PH (e.g., idiopathic PAH or PAH
associated with scleroderma), these patients tend to
have mild to moderate elevations in pulmonary pressures
but similar impairments in exercise capacity and similar
mortality rates.
What are the causes of pulmonary hypertension in
sickle cell disease?
It is clear that there are several risk factors and
etiologies for pulmonary hypertension in patients with
SCD. Clinical and laboratory studies suggest that a main
mechanism associated with the development of PH in
SCD is the presence of hemolysis, which leads to the
release of free hemoglobin into plasma which inactivates
the vasodilator nitric oxide. This decrease in nitric oxide
activity leads to vasoconstriction, vascular proliferation
and activation of coagulation pathways in the pulmonary
vasculature. Other contributing factors include chronic
thromboembolic disease, chronic hypoxia (low oxygen
levels), chronic liver disease and relaxation abnormalities
of the left ventricle (also known as diastolic dysfunction).
HEALTH MATTERS
S
ickle cell disease (SCD) is one of the most common
monogenetic inherited disorders worldwide. The
disease is caused by a mutation in one of the
hemoglobin protein chains that produce an abnormal
hemoglobin named hemoglobin S. Hemoglobin S causes
red blood cells to become entrapped in small blood
vessels as well as break down inside the blood vessels,
a process called hemolysis. These abnormal phenomena
lead to severe anemia, frequent episodes of pain due to
tissue ischemia and injury to vital organs.
Pulmonary complications are major causes of
death in patients with SCD. Among these complications,
pulmonary hypertension has emerged as a major threat
to the well-being of these patients. Over the last five
years, we have learned a great deal about the role of PH
in SCD, but there are still several questions that remain
unanswered about this disorder.
What are the treatment options for patients with sickle
cell disease and pulmonary hypertension?
Currently, there are limited data on the effects of
any specific treatment modality for PH in patients with
SCD. One of the first treatment priorities should be to
maximize SCD treatment with hydroxyurea or chronic
red blood cell transfusions. In patients with proven
pulmonary arterial hypertension, treatment with PAHspecific drugs should be considered based on what is
known for other diseases associated with PAH. However,
there are very little treatment data from studies in
patients with SCD.
We have recently conducted a study testing the
role of sildenafil in patients with SCD. This placebocontrolled study was designed to test whether sildenafil
could improve exercise capacity (assessed by the
six-minute walk test) in 132 patients with SCD with an
elevated estimated pulmonary artery systolic pressure
assessed by echocardiogram and a low six-minute walk
test distance. After 74 patients were enrolled, the study
was stopped early due to a higher percentage of subjects
experiencing serious adverse events in the sildenafil
group (45 percent of sildenafil, 22 percent placebo). This
difference was due to a higher rate of hospitalizations
due to sickle cell-related pain episodes in the sildenafil
group (35 percent with sildenafil vs. 14 percent with
placebo). Unfortunately, these surprising findings
prevented the completion of the study and full analysis of
efficacy data.
Conclusions
An elevated estimated pulmonary artery systolic
pressure assessed by echocardiogram is common in
patients with SCD and a major risk factor for death in
these patients. Pulmonary hypertension is also common
in SCD and is associated with decreased exercise
tolerance and an increased risk of death.There are
many conditions that can cause PH in SCD. Sildenafil
PATHLIGHT SUMMER 2011 story continued on page 18
17
News from the network
HEALTH MATTERS
PHPN Announces Revi t a l i z e d M e n t o r P r o g r a m
T
he PH Professional Network (PHPN) announces
the newly revitalized PHPN Mentor Program. This
program was revamped to meet the growing
needs of the PH allied health community and seeks
to connect more experienced professionals with
those who are newer to the field of pulmonary
hypertension.
Mentors are available to answer questions and
provide individual support to new PHPN members
who express a need for support in the following
areas:
• Sharing clinical practice experiences;
• Understanding their role in a collaborative
practice;
• Defining their role as an active member of PH
Professional Network.
To request a mentor or for more information,
contact [email protected] w
PH Resource Network
Changes Name
PH
Resource Network recently changed its name to PH
Professional Network (PHPN) to better reflect its
increasingly diverse membership of nurses, pharmacists,
physician assistants, nurse practitioners, respiratory
therapists, physical therapists, dietitians and other allied
health professionals working in the field of PH. Over the
next year, PHA will be transitioning our materials to reflect
this change. We are excited about the opportunities this
new name will offer as we look to provide further support
and targeted resources to the range of disciplines involved
in providing care to PH patients.
To learn more about PH Professional Network, visit
www.PHAssociation.org/PHPN
Allied health professionals: Don’t miss the opportunity
to learn more about the PHPN Mentor Program at the
2011 PH Professional Network Symposium Inspiring
Hope: New Directions in PAH this September, where
attendees will be able to network with PHPN mentors
and ask questions related to their areas of expertise. For
more information about the Symposium, turn to p. 15.
research corner continued from page 17
does not appear to be well tolerated in patients
with SCD. There is a major need for large trials of
novel therapies for this patient population. w
Suggested Reading
1.
Machado, RF, Barst, RJ, Yovetich, NA, Hassell, KL, Kato,
GJ, Gordeuk, VR, Gibbs, JS, Little, JA, Schraufnagel,
DE, Krishnamurti, L, Girgis, RE, Morris, CR, BermanRosenzweig, Badesch, DB, Lanzkron, S, Onyekwere,
O, Castro, OL, Sachdev, V, Waclawiw, MA, Woolson, R,
Goldsmith, JC, Gladwin, MT, Hospitalization for pain in
patients with sickle cell disease treated with sildenafil for
elevated TRV and low exercise capacity, in Blood 2011
blood-2010-09-306167; published ahead of print April
28, 2011, doi:10.1182/blood-2010-09-306167
2.
Chest 137(6 Suppl): 30S-38S, 2010
3.
JAMA, 299(3): 324-31, 2008
4.
Am J Respir Crit Care Med. 175(12):1272-9, 2007
5.
JAMA 296(3):310-8, 2006
6.
N Engl J Med. 350(9):886-95, 2004
By Roberto F. Machado, MD, Associate Professor of
Medicine, Section of Pulmonary, Critical Care Medicine,
Sleep and Allergy, University of Illinois at Chicago
18
“ H e l p f u l h i n t s ” f r o m t h e ph p r o f e s s i o n a l n e t w o r k
t’s that time of year again … time to pull out the shorts
and fire up the barbecue! Summer is a time for outdoor
fun with family and friends. There are, however, a few
things you should remember when you are off to enjoy all
this season has to offer.
I
3 . Pay attention to your dressings.
1 . Take care of your medication.
4 . Watch your salt!
• Many medications are heat and light sensitive.
Take care to keep your medications in a cool, dry
place. For those patients on continuous infusion
medication, be sure to keep your pumps, lines
and back-up medications protected from the
heat and light. FlolanTM/epoprostenol patients
need to be sure to pack extra ice packs on
especially warm days and keep them cool. Do
not leave your medication/ice packs in the car
for prolonged periods in the warm weather.
• Be sure to have all of your medication
appropriately labeled. This will be especially
helpful in an emergency or when traveling
through airport security.
2 . Stay cool. There are a few reasons to stay in the
shade when the sun comes out:
For patients on continuous infusion therapy, keep in
mind that sweat can loosen your dressings. Be sure
to check them often for lifting. Bring back-up dressing
change supplies in case your dressing comes loose.
Summer can be particularly challenging for PH
patients, especially when presented with the enticing
high-sodium foods generally served at outdoor
cookouts. Remember that salt and water are best
friends. The more sodium you consume, the more
fluid you will also consume. Too much fluid can
worsen your PH. There are plenty of helpful resources
to learn how to enjoy the same foods as your friends
while still taking care of your PH. The American Heart
Association has a section full of low-sodium recipes:
www.PHAssociation.org/HeartLowSodium. Also,
a helpful section on controlling salt and sodium
consumption can be found on PHA’s website: www.PHAssociation.org/SaltAndSodium.
Additionally, many low-sodium cookbooks are
available at your local library.
HEALTH MATTERS
A PH Patient’s Guide to Summer
5 . Most importantly: Have fun this season!
• Many of the medications given for PH can
increase the risk of sunburn. It is important to
wear sunscreen with an SPF of at least 15 and to
try to avoid prolonged exposure to sunlight.
• Excessive heat causes dehydration, which
can alter your electrolyte balance. Patients on
diuretics and potassium replacements need
to be extra cautious to avoid dehydration. Be
especially careful when consuming caffeinated
drinks or beverages containing alcohol.
• Spending time in the heat can increase your
thirst, which can lead to fluid overload, putting
stress on your heart.
“
Deep summer is
when laziness
finds respectability.
~ Sam Keen
”
By Lisa L. Roessel, FNP-BC, Pulmonary Hypertension Program
Coordinator, Legacy Pulmonary Clinic, Portland, Ore.
DISCLAIMER
We encourage readers to discuss their healthcare with their doctors. This
newsletter is intended only to provide information on PH/PAH and not
to provide medical advice on personal health matters, which should be
obtained directly from a physician. PHA will not be responsible for readers’
actions taken as a result of their interpretation of information contained
in this newsletter.
19
meet the doctor
HEALTH MATTERS
Meet Dr. Murali Chakinala: A Passionate Ally in the Fight Against PH
D
r. Murali Chakinala is an
Associate Professor of
Medicine at Washington
University School of Medicine
in St. Louis, Mo. He is a
member of PHA’s Scientific
Leadership Council (SLC), the
guiding body for PHA’s clinical,
research and medical education activities, and he serves
as chair of the PHA 30-City Medical Education Program
Planning Committee. He also recently served as 2011 PHA
on the Road Regional Committee Chair for St. Louis. The
following is an interview with Dr. Chakinala.
You specialize in pulmonary and critical care medicine.
What initially sparked your interest in PH? I became
acquainted with PH in the late 1990s, during my training
to become a lung transplant physician at Washington
University. At the time, only epoprostenol (FlolanTM) was
approved, and patients were typically listed for transplant
soon after diagnosis. I was captivated by a couple of
patients, particularly how they were transformed from being
severely debilitated to being active and vibrant again. PH
also provided me the opportunity to meld some of favorite
subjects from medical school: pulmonology, cardiology
and rheumatology. This fascination, coupled with some
serendipity, launched my career as a PH specialist. It’s still
such a new field with new therapies, evolving treatment
strategies, growing timelines and so many unanswered
questions that it remains just as captivating 10 years later.
What advances in PH treatment have you seen since
you first started practicing? Pretty much everything is
an advance! We went from one IV therapy to nine FDAapproved therapies in about 10 years. The biggest things,
however, are the push to simpler therapies, widespread
use of combination therapy, and the ability to delay and in
some cases avoid transplantation altogether. We still have
a long way to go, but we should be proud of what we as a
community have accomplished.
What is the most important piece of advice you give
your PH patients? Be your own advocate! This is a tough
disease, and there is a lot of misunderstanding among
healthcare practitioners. Don’t assume that all practitioners
understand the disease and know what’s best for you. If
things aren’t going as advertised, seek additional input,
especially at PH Centers across the country. Become
20
educated about your disease and network with others.
There is such a rich network around the country, and
it’s a shame not to take advantage. There is strength in
numbers!
How did you become involved with PHA? I knew from the
beginning how vital PHA is to the fight. In 2002 I went to
my first eye-opening support group meeting. Later that year,
I attended my first PHA International Conference and was
awestruck by the entire experience. I have been to every
PHA International Conference since then and have proudly
served on numerous panels and committees.
As our center matured, I understood the necessity
for an active PHA presence in our area. We’re blessed to
have wonderful support group leaders in our region who
work closely and tirelessly with us to get the word out about
PH, educate/empower patients and help ground us as
medical professionals (who sometimes can get lost in the
numbers). Being invited to serve on the SLC is one of my
proudest professional accomplishments, as I am incredibly
honored to serve alongside the giants of the PH field. While
my time as 30-City chair hasn’t been long, I have already
found it to be incredibly rewarding. To me, these positions
are merely the latest way I can help PHA, which has helped
me, our center and our patients immeasurably over the
years.
You also served as the 2011 PHA on the Road Regional
Committee Chair for St. Louis. What effect did this
experience have on you? First, I was incredibly proud that
PHA chose St. Louis as one of the four sites in 2011. It
was an affirmation of the efforts of so many folks in our
region, including my nurses, our support group leaders,
our patients and their loved ones. I thoroughly enjoyed
the planning process and was thrilled that we recruited
representatives from four other centers in our region. It was
a collective effort, just like everything else at PHA!
Anything else you’d like to add? Everyone always says how
thankful PHA is for the efforts of the medical community
… and it should. But we don’t always give thanks for what
PHA and our patients give us. I became a physician to help
people, pure and simple. This community has provided
me the means to do just that. But beyond that, it provides
scientific stimulation, emotional gratification, and a sense
of purpose that so many in the world are deprived of. And
for that, I’m extremely grateful to my patients, PHA and the
community at large. w
Advancing the cause
Join the 50 State Media Challenge:
G e t N ew s C ov e r a ge i n 3 5 S t a t e s b y S e p t . 1 !
S
ince PHA’s 50 State Media Challenge kicked off at the
beginning of 2011, PHers have received 36 news articles
in 23 states. We’re almost halfway to our goal of raising
awareness in all 50 states. Help us get the rest of the way
there! Get involved in the challenge and find out how you can
get a media success in your state. For tips and resources
to get you started, contact Elisabeth Williams at 301-5653004 x753 or [email protected] or visit www.
PHAssociation.org/Awareness/50StateMediaChallenge
In the meantime, get inspired by a few of the 50 State
Media Challenge success stories from across the country:
Dunne Family Raises PH Awareness in Multiple
Newspapers (Delaware)
Support Group Leader Reaches out to PH Patients
(Missouri)
Florine Tripp talked with the Columbia Daily Tribune
about her life with pulmonary hypertension and her new
role as the Mid-Missouri Support Group Leader. Florine
encouraged the reporter to reach out to other support group
members, her PH doctor and PHA for background information
on PH. That left Florine free to focus on telling the reporter
about her role as a support group leader and her life with PH.
In the article, Amy Fair, a fellow support group member, said,
“Even if nobody else shows up [to the support group meeting],
I’ve met Florine, and Florine and I are together.”
Lifelong Friends Talk about Life with PH (California)
Pulmonary hypertension patient Molly Dunne has
appeared in several local newspapers in the state of
Delaware. For each of the articles, Molly’s family and
friends talked to reporters about her PH diagnosis, medical
progress and the fundraiser they organized to help cover
Molly’s medical costs. “We’ve been lucky to find a real ally
in a local reporter who has been kind enough to promote
all of our fundraisers,” says Erin Lacy, a family friend.
“I recently wore my ‘I believe in Molly’ shirt and had
someone stop me and ask if it was Molly Dunne — I
was thrilled! It’s exciting to get the word out there and
get people educated about PH.”
Transplant Recipient Educates about Organ
Donation (Virginia)
Dawn Contreras and her best friend Amanda Schulte
were diagnosed with pulmonary hypertension when they were
kids. In an article that appeared in the Modesto Bee, which
has more than 175,000 readers, Dawn and Amanda talked
about their lifelong friendship, Amanda’s recent transplant
surgery and Dawn’s wait for a double lung transplant. “We
both know the anticipation,” Amanda says. “We both know
the fear.”w
“
It’s exciting to get the word out there
and get people educated about PH.
Maddie Shinaberry was interviewed in the
Pittsburgh Post-Gazette last year about her 2009 double
lung transplant. Recently, she was interviewed again
about her advocacy work promoting organ donation.
Maddie speaks to local school classrooms about her
lifesaving double lung transplant and is working with
Virginia Delegate Richard P. “Dickie” Bell on a bill that
would require 30 minutes of organ and tissue donation
education in all ninth-grade health classes throughout
the state of Virginia. “I want them to know the shocking
statistics,” Maddie says. “About how much of a
difference you can make.”
PATHLIGHT SUMMER 2011 ”
Add more stars to our map! Tell your
story and help us spread PH awareness
to 35 states by Sept. 1.
21
Help Find a Cure from the Comfort of Home: Start Fundraising Online
H
pulmonary hypertension association
ADVANCING THE CAUSE
ow many times have you asked yourself,
not just the tech-savvy: if you can send
“What can I do to make an impact in
emails, you can start fundraising online for
WEB OF
the fight against PH?” Whether you
PHA! We have a step-by-step guide on our
FRIEND$
are brand-new to our community and ready
website and you can contact me for more
to get involved or you are an experienced
information or to brainstorm your ideas.
advocate or awareness-raiser, now is the
Whether you’re still deciding to do a
perfect time to rally the financial support of
Web of Friends campaign or are ready to
your family and friends through a personal
get started, PHA is here to help! For more
empowered by hope
fundraising page.
information or to get started, visit
No one can do it alone. And that’s exactly why PHA
www.PHAssociation.org/Fundraise/Online, email
offers a program to help your family and friends show you [email protected] or call Jennifer at 301-565their support while helping to enhance lives and defeat
3004 x756. w
PH. PHA’s Web of Friends program provides the perfect
By Jennifer Kaminski, PHA Development Associate
opportunity to share your story and raise awareness of
PH while raising funds to support PHA’s programs and
services.
Attention Facebook Fanatics
People launch a personal fundraising page for a
ove beyond Facebook Causes and make Web of
variety of reasons. Some start a page to honor a patient,
Friends your home base for raising funds online.
like Laura D’Anna, who raises research funds in memory
Unlike special Facebook wishes that last only a
of her sister, Rachel; others celebrate a personal
few weeks, fundraising pages can remain active for
milestone, like Dave Rider, a PH patient who started
years — giving you a better chance to reach your
a page in honor of his birthday. Others create a page
network when they’re able to give. Plus, you can still
simply to give back and make a difference in the fight
use your Facebook Wall to promote your page and
against PH.
raise funds for PHA.
Most importantly, online fundraising is for everyone,
M
dr. michael mcgoon doesn’t have ph. his vision
is a world where no one else does, either.
Michael McGoon, MD, a PH-treating physician and member of
PHA’s Scientific Leadership Council and Board of Trustees, has
been inspired by PHA’s work and the stories of its members. “PHA
is a unique organization,” Mike says. “From a medical perspective, it’s
amazing to see a group of patients, caregivers, researchers, physicians
and allied health professionals all working toward a common goal. His
wife, Bonnie, has been just as involved.
To read how Mike and Bonnie continue to devote their efforts to
defeating PH, visit PHAssociation.org/Give/McGoon
Like the McGoon family, you can strike a blow against PH by
designating PHA as a legacy beneficiary. Your contribution will help
shape a brighter future for all those affected by PH. For details, call us
at 301-565-3004 x767, or email [email protected].
Visit our website for more information at PHAssociation.org/Give.
22
Community Creativity Shines through Lantos Awards
embers of the PHA community have more than
» » Generation Hope member Colleen Brunetti will
» » Everyone knows that living with PH can take an
emotional, as well as a physical, toll on patients
and family members. That’s why Spain’s Asociación
de Hipertensión Pulmonar (ANHP), under the
leadership of Juan Fuertes, is organizing a seminar on
“Psychological Care for PH Patients.” The goal is to
educate psychologists so they can provide professional
care to PH patients, no matter where they live in Spain.
It is also expected that the trained psychologists will
inform their patients with PH about ANHP’s services.
» » One of the great challenges that young adult female
PH patients face is being told that they should not
have children. Hannah Lahmeyer, a PH patient and
adoptive mom, will be developing a “Guide to Building
a Family while Having PH.” Hannah plans to work
with a doctor, social worker and grief counselor to
develop the content for
this guide which will be
widely distributed to
the PH community and
is particularly targeted
to PHA’s Generation
Hope, a group for
patients in their late
teens to early 30s.
» » Donna Lain, who lost her daughter Kari Beth in 2003,
wants to continue to give back to the PH community in
Kari’s memory. That’s why she designed “Kari Bags,”
which she will fill with age-appropriate toys, games and
stress-relievers. “Kari Bags” will be distributed free-ofcharge through pediatric PH specialists and centers as
a way to brighten the day of kids who are living with
PH. Donna hopes, too, that the bags will help educate
adults and kids about the disease.
“Spread the Word” by developing public service
announcements (PSAs) that highlight PHA’s email
groups. These groups help connect patients and family
members, reduce isolation and share tips for living
better with PH. The PSAs will be promoted widely
through PHA’s network of support groups as well as
through members of PH Clinicians and Researchers
and our PH Professional Network.
» » In order to create a more cohesive PH community
in Norway, PHA Norway, under the leadership of PH
patient Hall Skåra, will host the organization’s “First
Users’ Meeting.” Until now PHA Norway has functioned
primarily through its website, but with this grant PHA
Norway plans to bring together patients and caregivers
from Nordic countries for the first time. A featured
participant will be a patient from Germany who will help
create links to other PH groups in Europe.
ADVANCING THE CAUSE
M
lived up to meeting the challenge of the Tom Lantos
Innovation in Community Service Awards program
by creating varied and, indeed, innovative approaches
to awareness-raising and developing new and creative
services for the PH community. We congratulate the
winners, look forward to the impact these projects will
make in the U.S. and abroad, and thank everyone who took
the time to develop and submit a proposal for the 2011
awards program. PHA is grateful to Gilead Sciences for
making this awards program possible.
Here’s a snapshot of the eight projects that are
receiving funding this year.
» » Steve Van Wormer, dad to PH patient Lucas, will
develop a series of “impactful, insightful and,
most importantly, hopeful” digital public service
announcements (PSAs) through a “PHA Viral PSA
Campaign.” The PSAs will feature the PH journeys
of patients, caregivers and medical professionals as
well as information about PH. They will be posted on
YouTube and Hulu and will be created so that they can
also be featured on the radio, TV and in print.
» » In Israel, Yosef Gotlieb, Joni Berg and Aryeh
Cooperman will organize a “Symposium on Pulmonary
Hypertension: Prospects for Progress” for PHA
Israel. The group plans to hold an intensive one-day
conference on PH for the medical, research and public
health communities. Its goal is to inform professionals
about the intricacies of diagnosis and treatment and
the difficulties of living with PH. In
addition, the organizers plan to hold a
briefing about PH for health reporters
and other media professionals.
» » James “Dave” Rider will be raising awareness one
step at a time as he walks across the state of
Colorado in “Dave’s Walk of Hope, Awareness and a
Cure for PH” — no simple feat for anyone, let alone
for a PH patient. Dave’s plan calls for him to head out
on Sept. 1, 2011, and complete his walk on Sept. 30,
posting a daily video of the walk and the people he
meets along the way.
23
ADVANCING THE CAUSE
Behind the Scenes:
A Look in to PHA’s Insu r a n c e A d v o c a c y E f f o r t s a n d V i c t o r i e s
W
hen PHA hears about a specific insurance policy
that is detrimental to the PH community, we
advocate for change. Often this means working
directly with the insurance company to improve its
understanding of PH. Over the past few months, PHA
responded to several unfavorable insurance policies —
capturing victories for the entire PH community:
2. The Problem: BlueCross BlueShield (BCBS)
of North Carolina eliminated coverage of
combination therapy for oral PAH medications,
claiming that such coverage is “investigational”
and therefore subject to denial.
1. The Problem: In February 2011, Coventry
Health Care in Ohio decided it would not cover
RemodulinTM — or any prostacyclin — at doses
greater than 40 ng/kg/min. This decision was
made despite the fact that many PH patients are
safely receiving treatment at doses of 100 ng/
kg/min, or more, to achieve optimal benefit.
The Solution: PHA teamed up with United
Therapeutics to provide educational materials —
including a letter from PHA’s Scientific Leadership
Council (SLC) — to Coventry. Before another
PH patient could be affected, Coventry adjusted
its policy to cover higher doses of prostacyclin
treatment based on the educational materials
they received!
In
The Solution: PHA’s SLC sent a letter to BCBS in
support of combination therapy coverage. Then,
Duke University’s Pulmonary Hypertension Center
met directly with BCBS to advocate on behalf of
their PH patients. PHA’s and Duke’s persistent
advocacy and open dialogue with BCBS — along
with letters from PH patients — convinced
the company to reinstate combination therapy
coverage for PH, in alignment with the SLC’s
standard of care. Victory!
I
f your insurance company is denying coverage
for a PH-specific therapy, including combination
therapy, let us know. While we can’t solve every
problem, we may have resources that can help.
Contact PHA at [email protected] or
301-565-3004 x773.
surance Finds:
Glossary of Terms
“
My EOB shows that I have a $7,000
coinsurance I have to pay out-of-pocket
because my PH medication isn’t included on
my HMO’s formulary.
“
”
I need to obtain prior authorization
before Medicaid will approve a visit to my
PH specialist because she is considered
out-of-network.
24
”
N
avigating your insurance plan can be difficult
enough without having to decipher insurance
terminology. The PHA Insurance Glossary of Terms
can help you make sense of insurance vocabulary.
Visit www.PHAssociation.org/Patients/
Insurance/Glossary or call 301-565-3004 x773 to
request a print copy. w
ADVOCACY IN ACTION
story continued from page 1
A Big Start!
The Tom Lantos PH Research and Education Act
of 2011 was introduced just a few months ago, but PH
advocates are already making headway:
• PH patients Conchita Watson and Georgia Milosevic
met with Rep. Chris Van Hollen (D-MD) in February.
The Rev. Steve White visited Capitol Hill in April. Both
visits led to great results. Read more: pages 26-27.
• The inaugural National PH Call-In Day on April 26
generated more than 100 calls to Congress. Thank
you to everyone who participated! Read more: p. 26.
• Ed Hahn, the brother of PH patient Colleen Connor,
visited Rep. Jim Gerlach (R-PA) at one of his local
offices in Pennsylvania. Rep. Gerlach became an
original co-sponsor of the Tom Lantos PH Research
and Education.
Join us!
None of us can defeat PH alone, but when we
work together, victory is within reach. To learn more,
contact Elisabeth Williams, PHA’s Grassroots Campaigns
Associate, at 301-565-3004 x753 or Elisabeth@
PHAssociation.org w
ADVANCING THE CAUSE
By Katie Kroner, Margaret Beardsworth & Elisabeth Williams
PHA Advocacy and Awareness Department
P u t a Face on PH: Schedul e a H o m e t ow n M e e t i n g w i t h a
M e mber of Congress this Au g u s t !
T
his August, your Members of Congress will leave their
Washington, D.C., offices and head to their home
states to talk to constituents about the issues they
care about. It’s a great opportunity to tell your senators
and representative about the Tom Lantos Pulmonary
Hypertension Research and Education Act of 2011 and
how co-sponsoring the bill will bring us closer to new PH
research and ultimately a cure.
Make the Most of District Visit Month this August:
• Schedule a visit with your Members of Congress in
their local offices! Visit www.PHAssociation.org/
Advocacy/Toolbox or contact Elisabeth Williams at
301-565-3004 x753 for contact information for your
senators and representative as well as a sample
script for requesting a meeting. Even if your Members
of Congress have already co-sponsored the PH
Research and Education Act of 2011, you can take this
opportunity to say something they rarely hear — thank
you. Invite family and friends to join you!
• Invite Members of Congress to your support group
meeting! Last August Rep. Jason Altmire (D-PA)
attended Merle Reeseman’s support group meeting.
After spending more than an hour talking with and
listening to PH patients, he announced his support
for the Tom Lantos PH Research and Education
Act. “When I get back to Washington, D.C., I will do
everything I can to get my colleagues to co-sponsor
this bill,” Representative Altmire announced. “It
PH patient and support group leader Merle Reeseman (center)
with her husband Tim (left) and Rep. Mike Kelly (R-PA)
passed in the House before. We’ll get it to pass
again.”
If meeting with your Members of Congress still
seems intimidating, keep in mind they are human just
like you. PH patient Diane Ramirez found that out the
first time she met with one of her senators from North
Carolina. “I was really nervous sitting there,” she recalls.
“I was intimidated by his desk and all his pictures with
the President and so on. Then, I looked down — he
had no socks on! In my head I laughed. Then I relaxed
and realized he was human. Yes, he has a position of
authority and can help us, but he wasn’t wearing socks!”
Get started today by reviewing the resources on
PHA’s website: www.PHAssociation.org/Advocacy/
ConnectLocally w
25
Three Stories, One Outcome: Legislative Progress
ADVANCING THE CAUSE
Congressional Visit Yields PH Research Act Co-sponsor!
I
n February, PH patients Conchita Watson and Georgia
Milosevic visited Rep. Chris Van Hollen’s (D-MD)
district office in Rockville, Md., to encourage Rep.
Van Hollen to co-sponsor the Tom Lantos Pulmonary
Hypertension Research and Education Act of 2011.
Conchita first met with a member of Rep. Van
Hollen’s staff last November after PHA’s Congressional
Luncheon on Capitol Hill. In that conversation, she spoke
about how the PH Research and Education Act would
save the lives of PH patients. “The entire time, the staff
member listened and was very attentive,” Conchita
recounts.
After the Congressional Luncheon, Conchita
immediately sent the staff member a letter thanking him
for his time, reminding Rep. Van Hollen to co-sponsor the
bill and offering herself as a resource for any PH-related
questions. In reply, she received an invitation to visit
Rep. Van Hollen’s district office to speak directly with
him about the PH Research and Education Act.
At the meeting, Georgia and Conchita shared their
PH journeys. “All of my doctors were too busy to help
me,” Georgia explained to Rep. Van Hollen. “It wasn’t
until I saw one of the young medical residents that I
got my PH diagnosis.” Georgia emphasized that her
journey toward a diagnosis was long, frustrating and not
uncommon for many PH patients. In the couple of years
it took for her doctors to properly diagnose her, Georgia
went through bouts of depression and also wound up in
the hospital two times because her doctors kept ignoring
critical PH symptoms.
L to R: PH patient Conchita Watson, Rep. Chris Van Hollen (D-MD), PH
patient Georgia Milosevic, PHA President Rino Aldrighetti, Katie Kroner,
PHA Director of Advocacy and Awareness, and Gavin Lindberg, PHA’s
representative on Capitol Hill. As a result of this meeting, Rep. Van
Hollen became an original co-sponsor of the bill.
Conchita admits that she was a little nervous about
the visit initially, but after she and Georgia shared their
stories, Conchita knew they had made an impact. “I had
a feeling … that he [Rep. Van Hollen] was going to do
something about the bill. I could see that Georgia’s story
really had an effect on him.”
Georgia says, “I can’t really emphasize enough how
nice Van Hollen’s staff was to us. They took us into his
office and really listened to us.” Shortly after their visit,
Rep. Van Hollen officially co-sponsored the Tom Lantos
Pulmonary Hypertension Research and Education Act
of 2011. A visit from a constituent is the number one
reason a senator or representative will co-sponsor our
bill. Congratulations to both Conchita and Georgia! We’re
one co-sponsor closer to a cure! w
PHers Shout Out During National PH Call-In Day
I called my rep today. Took almost no time at all. By the
time I was done, my fresh cup of coffee was still hot!
~ Colleen Brunetti, PH Patient
M
embers of Congress received more than 100 phone
calls from PHers and their friends on April 26 — the
inaugural National PH Call-In Day — urging them
to support the Tom Lantos Pulmonary Hypertension
Research and Education Act of 2011. That’s the most
calls the PH community has ever made on a single day,
and legislative staff can expect a lot more.
One activist not only called his own members of
Congress but also emailed 300 friends to spread the
call request beyond the PH community. Within 24 hours,
two health legislative assistants on Capitol Hill had
contacted Rep. Kevin Brady’s office to learn more about
becoming an original co-sponsor of the bill, and many
more congressional staff were doing their homework on
pulmonary hypertension.
“It makes me really proud to see all the posts
on here about people’s experiences calling their
representatives today,” said Stuart Berwick about posts
on Facebook in response to National Call-In Day. Chris
Leber Morres added, “It’s a proud day for PH!”
Call-In Day might be over, but it’s not too late to
contact your Members of Congress. Call today! w
Three stories continued on next page
26
Rev. White Goes to Washington ... to Advocate!
I
ADVANCING THE CAUSE
an original co-sponsor in less than
25 words and dropped the name
of Tom Lantos, whom he knew had
been a close friend of McGovern’s. At
that, Rep. McGovern exclaimed, “The
answer is ‘yes!’”
Other staffers we met listened
attentively as we told them what PH
is and why this bill is so important. I
told them about my daughter Christen
don’t know about you, but
and how she had lived with PH for
whenever I hear the First
some time before she was finally
Amendment of the Constitution
The Rev. Steve White (left) with Katie Kroner,
diagnosed, in spite of many visits to
mentioned on the news, I usually
PHA Director of Advocacy and Awareness
the doctor for shortness of breath and
think of freedom of religion, freedom
other symptoms that I now know are classic signs of PH.
of speech, a free press and our right to assemble. But it
We explained how the bill will help educate doctors and
is when I exercise the last clause of the First Amendment
the general public about PH so that the disease can be
that I am most aware of how unique our form of
diagnosed as early as possible and thus prolong life. At
government is and of how proud I am to be an American.
the end of every meeting, we asked the staffer to urge
I am referring to our right to petition the government for
his or her boss to become a co-sponsor of our bill. And
redress of grievances.
I reminded them that I’m from a huge French-Canadian
I took full advantage of this right on Monday, April
family spread all over Massachusetts that really wants
4, when I joined our friends from PHA — Gavin Lindberg,
this bill passed. In fact, I think Gavin had the impression
Katie Kroner and Rino Aldrighetti — on Capitol Hill to
that I had more cousins at the end of the day than I
visit the offices of my senators and congressman from
Massachusetts and other members of the Massachusetts had in the morning! It was an exhilarating day and a
successful one.
Congressional delegation to seek their support for
Each of us has the right to do what I did on Capitol
the Tom Lantos Pulmonary Hypertension Research and
Hill. We all have the right to ask our government to help
Education Act of 2011 which will soon be introduced by
us solve problems that none of us can solve alone. Who
Rep. Kevin Brady (R-TX) and Sen. Bob Casey (D-PA).
else but the government would do anything to educate
It was the perfect day to be in Washington. It was
the public about a disease like PH? Who else but the
warm and sunny and the cherry blossoms and flowers
government would focus research efforts on a disease
were at their peak. And the reception we got from various
that is unlikely to make big fortunes for drug companies?
congressional staffers was just as warm. Some of you
So if you happen to be in Washington, or if you
may have met Sara Mabry, Sen. Casey’s legislative
can make a special trip there like I did, drop in on your
aide, at the PHA Congressional Luncheon. She is fully
representatives. You’ll be surprised at what a warm
committed to helping us get our bill passed and is
reception you’ll get. Tell them your own PH story. Ask
working closely with the senator and with Rep. Brady’s
them to support our bill to fight PH. You’ll make a big
office to get the bill introduced soon.
difference, and you’ll feel the pride in America that I felt
My congressman, Rep. John Olver (D-MA), has
when I visited Capitol Hill on April 4. w
been a longtime supporter of our efforts, and his staffer
assured us that he will be an original co-sponsor this time
as well. When we visited the office of Rep. Jim McGovern
Update: Thanks in part to the Rev. White’s visit, our bill
was introduced with one Senate co-sponsor and five House
(D-MA), the congressman himself came out and said,
“What’s up?” Gavin summed up our plea for him to be
co-sponsors.
In April, PHA Board member
Rev. Steve White traveled to
Washington to help get the Tom
Lantos Pulmonary Hypertension
Research and Education Act of 2011
introduced with a good number of
original sponsors. This is his story as
recorded immediately after that visit.
You can help us build on these early successes wherever you live! To send an email to your members of Congress,
visit PHA’s website at www.PHAssociation.org/Advocacy/Alerts, or contact Elisabeth Williams, PHA’s Grassroots
Campaigns Associate, at [email protected] or 301-565-3004 x753 to learn more.
27
Media V ictories Educat e H u n d r e d s o f T h o u s a n d s a b o u t P H
E
ADVANCING THE CAUSE
arly in 2011, PH community members scored media
successes with national audiences. In February, Dr.
Steven Mathai, Assistant Professor of Medicine at
Johns Hopkins University, and Debbie Castro, PHA Director
of Volunteer Services and PH caregiver, appeared on The
Kojo Nnamdi Show. In March, The Washington Post ran an
article about PH patient Kimberlee Ford.
Dr. Mathai and Debbie educated more than 700,000
listeners about PH when they discussed symptoms,
treatments and a typical day with the disease on the
Washington, D.C., area-based NPR program. Their audience
included one stunned caller who said, “Right now my
chest is pounding because what you’ve said has opened
up a flood gate inside of me. For the last 10 years, I’ve
had problems where I could hardly walk up the stairs, or
I couldn’t walk a block without having to stop and take a
breath.”
In The Washington Post’s weekly feature, Medical
Mysteries, Kimberlee Ford spoke about her struggle to
do everyday activities prior to her PH diagnosis. Talking
about the three flights of stairs she had to climb to get to
her apartment, she said, “When I saw those steps, I saw
mountains.” The feature focused on Kimberlee’s lengthy,
frustrating journey to diagnosis. Kimberlee spent a year
searching for answers while her symptoms grew worse.
Eventually she ended up in a coma in a hospital intensive
care unit. She woke up three days later.
After her doctors diagnosed her with severe primary
pulmonary hypertension, Kimberlee recalled asking for
a high blood pressure pill to help her with her condition.
Since that moment, she’s sought to educate herself and
her community about the disease.
Thanks to The Washington Post article and the NPR
radio segment, hundreds of thousands of people who had
never heard of PH will now be able to put a “face” to this
disease. For tips and resources to help you connect with
the media, contact Elisabeth Williams, PHA’s Grassroots
Campaigns Associate. Email [email protected],
call 301-565-3004 x753 or visit PHA’s website at www.PHAssociation.org/PHAware w
Pav i n g t h e Pa t h t o a C u r e w i t h R e s e a r c h
PHA
is proud of the many services, programs and
opportunities for involvement we are able to bring
to the PH community, but we know that our work will never
be done until there is a cure for this dreadful disease.
That’s why we reach out to our community every
summer and ask those who are able to be as generous as
possible in support of PHA’s research program.
Our multifaceted research program supports both
young and seasoned researchers. Recently we added a
new program with the potential to lead to advances in
the scientific understanding of PH, and we will soon fund
research targeted specifically to pediatric PH patients.
Your research support not only does so much good,
with funding from our research partners, your support
almost doubles! Consider this: in 2010, PHA invested
$522,500 in research and our partners contributed
another $912,500!
Over time, these research investments really add
up: Since the launch of PHA’s research program, we
have expended $4,540,356 on research and leveraged
$10,195,556 from our partners … an outstanding
investment in every way.
Ready to make your own investment? Go to www.PHAssociation.org/Donate/SU11 to donate online
or send a check in the enclosed envelope, noting it is for
the “Summer Research Appeal.” Thank you!
28
Tackling PH Research from Many Angles
H
ere’s a brief rundown of the four research programs
PHA currently funds in collaboration with our partners.
And with funding from the Robyn Barst Pediatric
Research Fund, we expect to add a fifth research
program soon.
PHA/NHLBI Mentored Clinical Scientist Award
(K08)/Mentored Patient-Oriented Research Career
Development Award (K23). This program, a partnership
with the National Heart, Lung, and Blood Institute, has
awarded eight grants to junior investigators to date.
PHA/ATS/Pfizer Research Fellowship in
Pulmonary Arterial Hypertension. This grant program, a
partnership between PHA, the American Thoracic Society
and Pfizer, has enabled us to support 10 faculty-level
researchers through 2010.
PHA/AHA Postdoctoral Research Fellowship
Award. In partnership with the American Heart
Association, this award supports post doctoral Fellows,
and PHA has made 24 awards to date.
PHA/Pfizer Proof of Concept Research Grants.
This new partnership with Pfizer supports research
projects in the early exploratory and developmental
stages. We will make two awards in 2011.
T h a n k y o u , I n t e r n s !
is grateful to our spring 2011 interns. They have made a real impact on the programs and services PHA is
able to provide. To learn more about PHA’s internship program, visit www.PHAssociation.org/Internships w
Flora Wong, Patient Outreach & Services
During Flora’s internship at PHA, she worked closely with the redesign and improvement
of the Envelope of Hope, a free information kit for newly diagnosed patients. She also
assisted with identifying educational needs, researching topics of interest and developing
new materials for PH communities. “Interning at PHA has been an extraordinary experience.
I am lucky to have had the opportunity to work with professionals who truly believe in PHA’s
mission,” she says. Flora received her Bachelor of Science in May 2011 from Virginia
Commonwealth University, and she will continue her education at nursing school using her
enhanced skills and experiences learned at PHA.
ADVANCING THE CAUSE
PHA
Chelsey Eberwein, Volunteer Services
This spring Chelsey helped PHA’s Volunteer Services team by calling support group leaders
to offer support and information about PHA resources. She also assisted Debbie Castro,
PHA’s Director of Volunteer Services, with the coordination of our weekly Volunteer Night.
Chelsey’s grandfather, Frank Hetrick, was a PH patient who attended this weekly Volunteer
Night with his wife Norma. Chelsey enjoyed her internship because it gave her the opportunity
to connect with so many caring individuals. This fall Chelsey continues her education at the
University of Maryland where she is a double major in Kinesiology and Women’s Studies.
Katie Anderson, Information Technology
Throughout Katie’s spring internship, she supported PHA staff in various areas of technology.
She managed PHA’s email database, upgraded the operating system on staff members’
computers and scanned all computers to update an internal document of all software at PHA.
“My most rewarding experience as an I.T. intern is helping the staff keep their technology
running smoothly so they can carry out their tasks as needed,” Katie says. “I don’t work
directly with the PH community, but I work in the background to make sure that the people
who do work directly with the community are able to do the best job possible.” Katie will
continue her work in information technology with an internship at Geico.
Pathlight wins Best of Categor y!
The magnet is back!
P
’s popular “PH
Resources at Your
Fingertips” magnet is
back. Get yours through
PHA’s online store (free
materials) or by calling
301-565-3004 x0.
PHA
athlight, the official newsletter
of the PH community, received
the 2011 Best of Category
Award in the Printing and
Graphics Association MidAtlantic
Excellence in Print Awards.
Pathlight won Best of Category
in the newsletter division “in
recognition of printing judged to
be superior quality in the 2011
Excellence in Print Awards.”
Request your
magnet today!
29
s u pp o r t g r o u p s
ADVANCING THE CAUSE
Spotlight on Suppor t G r o u p s : S a n t a B a r b a r a
W
hen you think of support groups, you probably don’t
think of meetings in a zoo. But when the Santa
Barbara Pulmonary Hypertension Support Group
decided to host a very special (and fun!) meeting for its
one-year anniversary last August, it brought their patients
to the city zoo for socializing and a special dinner. Since
PH patients talk openly about their condition, the only
“elephants in the room” at this meeting were, quite
literally, the elephants in the zoo! How about THAT for a
support group celebration?
The Santa Barbara PH Support Group held its
inaugural meeting in August 2009, and the group is still
going strong. Meetings take place every three months
with 30–50 patients and caregivers at each meeting.
The group not only provides time for socializing,
but offers medical presentations with experts in
the field. Topics include insurance issues, dealing
with hospitalizations, managing nutrition and diet,
considerations for oxygen therapy and exercise,
managing stress, emergency situations and much more.
The Santa Barbara Support Group started when Dr.
Jeffrey S. Sager moved to Santa Barbara and went into
private practice at Santa Barbara Pulmonary Consultants.
Patients asked him to start a PH support group, and he
did. Dr. Sager helps with meeting planning, and the two
support group leaders include Dr. Sager’s nurse, Zoe
Schultz, RN, MSN, and his wife, Dana. Even Dr. Sager’s
L to R: Dr. Sager, PH patient Norma Pew, and Zoe Schultz, RN, MSN, at
their support group’s first anniversary at the Santa Barbara Zoo
children, Dylan (age 9) and Taryn (age 7), are familiar
faces at the meetings.
Thank you to Dr. Sager, Dana, Zoe and the entire
group! For more information about the Santa Barbara
Pulmonary Hypertension Support Group, visit the group
website www.PHAssociation.org/SantaBarbaraGroup
or contact the leaders by email at CA-SantaBarbara@
PHASupportGroups.org. w
By Debbie Castro
PHA Director of Volunteer Services
New PHA Telephone S u p p o r t G r o u p L a u n c h e s i n J u l y
H
ave a hard time making it to a support group
meeting? No group in your area? Or maybe you’re
shy or just not sure a face-to-face support group
meeting is for you? No problem. PHA is bringing the
support group to YOU — straight to your home — via
a telephone support group. Try it out!
Anyone in the U.S. can participate. The topic of
the first meeting is “Getting to Know You.” Patients
and caregivers can choose to share their story or
simply listen in. Caregivers, also be on the look out for
caregiver support group calls — coming soon!
Save the Date: Thursday, July 28, 8 p.m. ET
Contact Debbie Castro for more information and to receive
the dial-in number and access code for the support group
call: [email protected] or 301-565-3004 x755
30
Don’t forget! For telephone support during
ANY time of the year, contact our
Patient-to-Patient Support Line: 800-748-7274.
s u pp o r t G r o u p s
W
ith more than 235 support groups
nationwide, meeting monthly
to quarterly, we’ve got some
great stories from support group
meetings to share. This new Pathlight
feature will give you a snapshot on
trends, news, views, and the latest
and greatest from support group meetings
occurring around the U.S.! Get a firsthand
look into all the great ways PH patients are taking
advantage of being a part of a support group.
What’s
new with
support
groups?
• Chair yoga has been all the rage with support groups
in the South! We’ve seen chair yoga meetings in
South Carolina and now in Pensacola, Fla. Support
group leader Donna Head told us she “had a blast”
and is “now hooked on chair yoga!”
• Did you hear? Fort Worth and Dallas, Texas, groups
had a joint meeting near the Cowboys stadium. In
spite of the temptation to go straight to the game,
the groups had more than two dozen patients and
caregivers in attendance and even picked up some
new members!
• Dozens of support groups across the country got a
healthy dose of advocacy by participating in PHA’s
National Call-In Day. For one, Del Val, Penn.,
Support Group members called their Congressionals
representatives throughout the day and felt
accomplished after speaking with the offices of so
many members of Congress. The Newport Beach,
Calif., Support Group also had a great experience
with advocacy that day. The group leader, Chris
Morres, says she “called Senator Feinstein’s office
and was shocked to hear they had already received
several calls!”
• Safety first! The Piedmont Area Support Group in
North Carolina invited a sheriff speak at a recent
meeting to discuss how to handle different safety
situations in the surrounding areas. According Diane
Ramirez, one of the group leaders, the sheriff was
“a very funny speaker” and the group had a fantastic
time: “It was nice to be in the meeting talking about
other life issues — not just PH!”
• Rainy weather and bad drivers in the streets of
Washington, D.C., didn’t wash out the D.C. Capital
Breathers support group meeting. This group
had a great turnout and members were very
interested in hearing the speaker talk about
his experience as a pastor, a cancer
survivor and a caregiver to Kim Ford,
PH patient and support group leader.
•
The Morristown, N.J.,
Support Group had phenomenal
turnout for its April meeting. About 30
people came together for a talk by a
Caring Voice Coalition expert. Did you know this
organization helps PH patients with services like
insurance counseling, legal assistance for disability
applications, peer mentoring and need-based
financial assistance? For more information, visit
www.CaringVoice.org
ADVANCING THE CAUSE
T h e PHA Suppor t Group “S c o o p ”
• The Fresno, Calif., Support Group had a great
turnout at its March meeting. With a speaker from
Stanford Medical, the group had 34 people show
up, including three newly diagnosed patients. What
a great example of what PHA support groups are all
about — bringing support to both new and veteran
PH patients!
• Chew on this: The Buffalo, N.Y., Support Group is
taking nutrition to a new level. The group leader,
Jaclyn Burdick, is collecting low-fat, diabetic-friendly
recipes to share among group members.
• Two leaders from New York and Ohio are
coordinating the creation of quilts to be showcased
at PHA’s 2012 International PH Conference. One
quilt will pay tribute to the memory of those we have
lost to this disease, and the other will focus on
support groups. Talk about a great way to “weave”
together the common “threads” among support
groups!
• The Rocky Mountain Support Group of Denver got
down to business! They welcomed PHA Board
Member John Hess as the speaker for its March
meeting. John, whose son is a 12-year-old PH
patient, told the group about the latest in PHA news,
research updates, and future goals for 2011. w
By Chelsey Eberwein
Former PHA Volunteer Services Intern
31
ADVANCING THE CAUSE
When Suppor t Groups and PHA on the Road Collide
32
T
his June, PHA traveled the country with PHA on the
Road: PH Patients and Families Education Forums,
making stops in Seattle, Pittsburgh, St. Louis and
wrapping up on June 18 in Minneapolis. What does it
mean for a local support group when PHA On the Road
comes to town? We checked in with the leader of a local
Minneapolis support group to see what effect PHA On the
Road had on her group.
The Twin Cities Support Group is no stranger
to events such as this; Minneapolis was, in fact, the
location of PHA’s 2006 International PH Conference
and Scientific Sessions. Six years later, and with
many new faces, the group couldn’t be more thrilled
to have its city selected for PHA on the Road. Twin
Cities Support Group leader Stephanie Layer loves
what these events have done to strengthen the group:
“[They are] well-orchestrated, full of information, very
fun and educational. I met a lot of people, and a lot of
information was shared.”
At PHA On the Road, attendees got a chance to
listen to area doctors speak about different aspects of
living with and treating PH, and they also got a chance
to ask doctors questions about the disease. This
interaction helped build relationships between those
living with PH and the medical professionals who treat
them. Stephanie emphasized this as one of the top
reasons for attending a forum: “[It is] important for the
doctors to know the patients in a setting outside of the
office. After you’re diagnosed, you have a lot of time to
think, time to think of more questions, and this is a more
relaxed atmosphere to talk in than the office.”
Leading up to PHA on the Road, support group
meetings helped prepare members for the experience so
they could get the most out of it. Stephanie encouraged
patients and their families to come to the events ready
to sit in on as many talks as possible, and she also
encouraged them to ask questions: “This is the time
to hear about new treatments and connect with other
patients. It’s like a mini-conference.”
Support group presence at educational programs
like PHA On the Road can also increase involvement and
participation in local support groups. For those who had
never met another patient before attending PHA on the
Road, the forum helped show them that there is a lively
community and other people dealing with the disease.
The forum provided an ideal time for support group
leaders and their members to reach out to potential new
Patient members of the Minneapolis Twin Cities Support Group
members who could benefit from the groups. The Twin
Cities Support Group members hope to see an increase
in group participation later this summer when they host
their annual celebratory picnic for PH patients and family
members. In 2010, 131 people attended, and they are
certain that advertising at PHA on the Road will bring
even more people this year. w
By Sophie Klein
PHA Volunteer Services Associate
Traveling for PHA on the Road
W
hile PHA on the Road was a chance for
Minneapolis PH patients to make connections
with other locals dealing with the disease, some
attendees at the forum came quite a distance to
be there. For Janice Howd, the leader of the Sioux
Falls, S.D., Support Group, PHA on the Road was
an opportunity worth traveling to experience. Janice
and members of her group crossed state lines
and traveled 280 miles from Sioux Falls because
“there aren’t many with PH in South Dakota, and
it’s important for me to go and bring back as much
knowledge as I can for our members,” she says.
Janice felt the trip was worthwhile because she had
the opportunity to learn, meet other leaders and
enrich her group through what she learned.
PHA on the Road reached four cities this
June, but its impact reached far beyond those
four state borders. As a result, patients from both
nearby and far away left the forums better informed
and, possibly, with some new friends.
Orlando, Fla., Support Group Connects with PHA’s Board of Trustees
Orlando Support Group leaders Melissa (right) and Dan Quevedo
met PHA founder and Board Emeritus, Dorothy Olson (center).
ADVANCING THE CAUSE
M
ore than 60 Orlando-area patients and caregivers
took advantage of a special PHA support group
meeting in March. PHA’s Board of Trustees meets
periodically in strategic locations across the country.
Whenever they meet, PHA tries to host a special support
group meeting so Board members and staff can connect
with the local community and vice versa.
At this special meeting, Board member and former
Board chair, Carl Hicks, discussed his adventures
lobbying decision-makers for PH research, education and
awareness. Patients shared their journeys with PH and
their victories in the PH community, including fundraising
successes and lobbying efforts.
To round out the meeing, Debbie Castro, PHA
Director of Volunteer Services; and Doreen Lucadamo,
PHA’s Director of Meetings and Conference Planning,
spoke about PHA’s International PH Conference and
Scientific Sessions which will take place in Orlando in
2012, and opportunities to get involved in volunteering
in the months leading up to the event. w
See you in Orlando for PHA’s 2012 International Conference!
CARE, SHARE, BE AWARE
LEADER RESOURCE CENTER
Support Group Leaders: Find Resources, Support in One Place Online
L
eading a support group can be fairly simple and
easy, but sometimes it can feel a bit overwhelming.
PHA has created an online Support Group Leader
Resource Center where you can find all of our leader
resources. We’ve also added easy forms for submitting
information to PHA.
In the Resource Center you can:
• Submit a Support Group Central Fund application
(for financial support for food at your meetings)
• Update your public contact information
• Submit meeting information for a postcard mailing
to PHers in your area
• Access free materials, sample fliers and images to
use in your materials
• Find tips for advertising your group’s events
• Watch recordings from our Second Tuesday
monthly leader trainings
• Review the Support Group Leader Manual
• Learn simple tips for keeping your group’s site upto-date with minimal effort or technical know-how
• Watch how-to tutorial videos on how to update your
group’s website
Support group leaders, visit the Resource Center
today at www.PHAssociation.org/SGLResourceCenter
(you will be prompted to sign in).
Not a leader, but interested in starting a group?
Contact us! [email protected] or
301-565-3004 x755.
33
special events
ADVANCING THE CAUSE
PH Awareness, Funds R a i s e d t h r o u g h I n a u g u r a l Wa l k
O
n April 9, the Inaugural Walk 2 Cure PH: Ellie Godina
Memorial Walk was held in Euclid, Ohio. The event
honored 2 ½ -year-old Ellie, who lost her battle with
pulmonary hypertension in 2010.
For months, doctors could not determine the cause
of Ellie’s symptoms. Ellie was eventually diagnosed with
acute PH. Tragically, she passed away only two days after
the diagnosis. Amid their grief, Ellie’s parents, Missy and
Joe Godina, vowed to raise awareness about the oftenmisdiagnosed disease. Missy says, “We wanted to raise
awareness and funds for a cure so that other families
won’t have to go through the same thing.”
And raise awareness and funds they did. Missy,
Joe and their Walk 2 Cure PH committee created a
special event that brought an entire community together.
The event drew nearly 400 participants for a three-mile
walk at Euclid High School and offered something for
everyone — everything from a kids’ corner with giveaways,
face painting and a balloon artist to educational tables
representing industry and area hospitals. The event even
kicked off with entertainment by the Euclid High School
marching band. The Walk 2 Cure PH raised more than
$31,000 for PHA’s research program and programs for
patients and their families. PHA spoke with Missy after
the event to learn about the various pieces that went into
creating this successful fundraiser.
Goals for Walk 2 Cure PH
In addition to their desire to raise awareness and
funds for PH research and patient programs, Missy and
Joe wanted to create a walk that would “keep Ellie’s
memory alive, and keep her legacy moving forward,” says
Missy. Since the date of the event, Missy continues to
receive feedback from the Euclid community describing
the ways Ellie has touched others. “People feel they know
her through the walk,” Missy says. “I now see people
driving around with the [PH awareness] ribbon car magnet.
It’s amazing how many know about PH now, when just one
and a half years ago, I didn’t even know what it was.”
Participants & Publicity
Largely because of word-of-mouth marketing,
Walk 2 Cure PH gained a huge amount of momentum
early in 2011. On the day of the walk, as threats of rain
dissipated, 90 walkers registered on-site, bringing total
attendance to nearly 400. “It was a really mixed crowd —
old, young, even newborns,” says Missy. Her background
as a teacher garnered substantial involvement from
34
Pictured left: Ellie Godina
Pictured right: Ellie’s parents Missy and Joe at the Walk to Cure PH
the local public schools, and Missy and her committee
planned several “mini” fundraisers throughout the
preceding fall and winter to drum up excitement for the
early spring walk, including a “change war” at Missy’s
school, which was covered by a local TV afflilate.
Volunteers
It takes a village … to put on a special event! In
addition to an event planning committee of eight, Missy
had more than 60 volunteers who helped with a multitude
of planning tasks and who ensured everything went
smoothly on the day of the walk. Friends and neighbors
greeted walkers on arrival and sold raffle tickets. Local
teens ran the face painting and kids’ corner. For all
their hard work, the Godinas made a point to publicly
acknowledge each volunteer during the walk.
Special Guests
The Godinas were successful in getting various civic
and PH community leaders to support the Walk 2 Cure
PH. The mayor of Euclid and the superintendent of Euclid
City Schools both attended, and as a result, each pledged
endorsement of next year’s walk. PH patient Merle
Reeseman, an active leader in the Cleveland-area PH
community, delivered the keynote speech. Shari Caffrey,
organizer of Race 2 Cure PH in Anaheim, Calif., lent
advice and friendship throughout the planning process
and traveled from California to attend.
Why It Matters
The Godinas chose to host Walk 2 Cure PH because
they knew it was one way to create something positive
out of grief. “The whole theme rotated around Ellie and
the memories we have of her,” says Missy. She recalls
when a student volunteer sang “Over the Rainbow” before
the walk began. For a variety of reasons, the Godinas see
rainbows as symbolic of their daughter. “A rainbow is just
story continued on page 36
special events
S
pring was an exciting time for PHA Special Events
with many fun walks, golf tournaments and themed
events. From first-time fundraisers to fifth-year
mainstays, take a look at snapshots from a few of these
incredible events!
Learn more about PHA Special Events by visiting
www.PHAssociation.org/SpecialEvents or contacting
Jessica McKearin, PHA’s Associate Director of Special
Events, at [email protected] or 301-565-3004
x765 w
ADVANCING THE CAUSE
E nergy Ab ounds in PHA’s S p r i n g S p e c i a l E v e n t s
Event: Spur a Cure for PH
Location: Phoenix, Ariz. Event: Scramble for a Cure Golf Tournament
History: Fifth Annual
Location: Las Vegas, Nev. History: Third Annual
Attendance: Approximately 150 participants
Pictured Above: The welcome committee and event co-chair
Amy Moseley (right) are ready to go!
Pictured Above: Eager golfers prepare to hit the course!
Fun Fact: The western-themed event featured a musical
Fun Fact: This year’s tournament featured a helicopter
performance by Nashville recording artist Sheylyn Jaymes!
ball drop!
Photo courtesy John Page, www/johnpsportsphotography.com
Event: Cure PH Golf Tournament and Luncheon
Event: Dunwoody High 5K
Location: Clemmons, N.C. History: Fifth Tournament
Location: Dunwoody, Ga. History: Inaugural
Attendance: More than 160 walkers/runners and many more
volunteers
Pictured Above: PH patient Bailey Brewer and her
grandmother enjoy the luncheon.
Fun Fact: The tournament was held at the renowned Salem
Glen Golf & Country Club, a Jack Nicklaus-designed course!
Fun Fact: The high school students planning the event chose
PHA as one of three beneficiaries, along with Autism Speaks
and the school’s graduating class of 2013. Nearly $1,700 was
raised for PHA in memory of Eve Greenstein.
35
ADVANCING THE CAUSE
special events calendar 2011
August 2011
Now is the perfect time to start planning your
November PH Awareness Month fundraising event!
Email [email protected] or call 301-5653004 x765.
Friday, Sept. 23, 2011
New England PH Forum
WHERE: HomeWood Suites, Scarborough, Maine
DETAILS: Jeannette Morrill at 207-695-3042 or
[email protected]
Tuesday, Aug. 30, 2011
PHA Fundraiser at Iron Pigs Baseball Stadium
WHERE: Allentown, Penn.
DETAILS: Joan Stevenson at [email protected] or 610841-1942
Saturday, Sept. 24, 2011
Swinging for a Cure Golf Tournament
WHERE: Webhannet Golf Club,
Kennebunk Beach, Maine
DETAILS: Jeannette Morrill at 207-695-3042 or
[email protected]
September 2011
The year’s third issue of Event-ful Times is
distributed at the end of the month. Make sure that
you’re on the list to receive this PHA Special Events
publication! Sign up at www.PHAssociation.org/
SpecialEvents/OrganizeAnEvent. Questions: Email
[email protected]
!
Sunday, Sept. 18, 2011
Colorado Pulmonary Hypertension
Run for PHun 2011
WHERE: Anschutz Medical Campus, Aurora, Colo.
DETAILS: Deb McCollister at Deb.McCollister@
ucdenver.edu or Beth Coleman at Coleman.Beth@
tchden.org
Saturday, Oct. 8, 2011
8th Annual Georgia Fun Walk
WHERE: Marietta, Ga.
DETAILS: Sally Maddox at 706-331-0938 or
[email protected]
Friday, Oct. 14, 2011
6th Biennial Rochester PHA Gala
WHERE: DoubleTree Hotel, Rochester, Minn.
DETAILS: Bonnie McGoon at 507-269-3267 or
[email protected]
!
For more Special Events coverage, visit
www.PHAssociation.org/SpecialEvents
Welcome Leslie Mahaney,
Special Events Associate!
Walk to Cure PH story continued from page 34
As PHA’s Special Events
Associate, Leslie is responsible
for working with PHA’s veteran
volunteer event planners to ensure
they have all the tools needed to
plan and implement successful
fundraisers for PHA’s research
program and patient services.
Leslie also maintains the resources PHA’s Special Events
program provides to its volunteers, including the production
of Event-ful Times, the Special Events e-newsletter. Leslie
has a clinical background in Child Life and has worked within
a hospital setting to enhance the quality of life of patients
and families. Leslie can be reached by phone at 301-5653004 x742 or email at [email protected] w
36
a piece of her,” says Missy. ”Every time I’m having a
bad day, a rainbow appears.”
They also know that choosing and hosting a
successful fundraiser will help PHA actively work
toward a PH cure by sponsoring cutting-edge medical
research and continuing to provide a community of
hope for patients and families affected by PH.
Looking Ahead
Because of the overwhelmingly positive
feedback, planning is already underway for the 2nd
Annual Walk 2 Cure PH, which is set to take place
in late April 2012. “We raised a lot more funds
than I ever thought possible,” Missy says. “It’s truly
amazing how generous people are. The community
involvement was fantastic.” w
By Jessica McKearin, PHA Associate Director of Special Events
community classroom
A Round of Applause for PHA on the Road Attendees and Speakers
I
n June, PHA on the Road: PH Patients and
PHA also thanks Dr. Paul Fairman, National
Families Education Forums made stops in four
Committee Chair of the 2011 PHA on the Road
ON THE
ROAD
new cities: Seattle, Pittsburgh, St. Louis and
program, the members of the PHA on the Road
Minneapolis. These regional forums brought
regional committees and the many speakers
together patients, caregivers, family members
who participated in these forums. Thanks to your
and medical professionals alike to provide exciting
dedication and hard work, we brought information on a
educational sessions, which covered everything from the
variety of PH topics into the hands of patients and their
basics of PH to lifestyle issues.
family members.
PHA thanks all those who attended and participated
Look for a full recap of the 2011 PHA on the Road
in the 2011 PHA on the Road forums. The success of this
forums in the Fall issue of Pathlight. PHA plans to go back
program, since its inaugural year of 2009, has been in large
“on the road” in 2012 — so stay tuned. We may be visiting
part due to the desire of the PH community to gain more
your city next!
education and understanding of this disease. Attendees
For more information about the PHA on the Road
traveled from far and wide to attend these forums, some
program, including photos from this year’s forums, visit
driving almost 500 miles to attend this full-day program!
www.PHAssociation.org/OnTheRoad. w
Summer Special:
PH Awareness Combo Pack!
Help raise awareness
while saving money!
PHA Classroom, a program of PHA’s Medical
Education Fund, provides a vibrant e-learning
community for patients and caregivers. This
free resource gives everyone the chance to learn about
pulmonary hypertension in their own way. All you need is an
Internet connection and a phone line if you’re participating
in a “live” event! Choose from a wide variety of topics
including the full range of presentations featured at PHA’s
9th International PH Conference and Scientific Sessions in
June 2010.
Patients and caregivers who are interested in
participating in a live question-and-answer session
can join one of the regularly scheduled interactive live
e-learning events. Recent live events included “Media
Matters: Working with the Media to Raise Awareness” and
“Healthcare Changes in 2011: How Healthcare Reform Will
Affect the PH Community.” Can’t make it to a live e-learning
event? Recordings are posted on PHA Classroom soon
after the event takes place. To learn more, see a list of
upcoming live e-learning events and access recordings, visit www.PHAssociation.org/Classroom w
Get a PHA Hat, Water Bottle
and Two Wristbands for $15!
Purchased separately, items total $21.
Only PHA Members are eligible for this special,
limited-time offer. Order now through Oct. 1 at the
PHA Online Store, www.PHAssociation.org/Store
or give us a call.
Not a member? Visit www.PHAssociation.org/Join
to become a member of PHA today!
Questions? Call the PHA Office at 301-565-3004.
37
Building Medical Education in PH
ADVANCING THE CAUSE
A Partnership Initiative to Advance Medical Understanding of Pulmonary H y p e r t e n s i o n
Pulmonary Hypertension:
An update on evaluation and treatment
Mayo Clinic, Jacksonville
Aug. 27, 2011
Jacksonville, Fla.
Email: [email protected]
Call: 1-800-462-9633
Website:
www.mayo.edu/cme/pulmonary-medicine-2011j953
Pulmonary Vascular Symposium
Eric P. Newman Education Center
Washington University Medical Center
Oct. 15, 2011
St. Louis, Mo.
Email: [email protected]
Call: 1-800-325-9862
Website:
http://cme.wustl.edu/pulmonary
To view a full list of education opportunities for medical
professionals, visit www.PHAOnlineUniv.org/Calendar
A Cause for Celebratio n !
Save the Date!
PHA said to “outperform most
other charities in America”
PHA’s 10th International Pulmonary Hypertension
Conference and Scientific Sessions
I
n recognizing PHA for
the eighth consecutive
year with a 4-Star (the
highest) rating, Charity
Navigator President and
CEO Ken Berger noted that
this indicates that PHA
“outperforms most other
charities in America” — and is an achievement
reached by only 2 percent of charities in the U.S.
Charity Navigator, America’s premier charity
evaluator, went on to say that this designation
“differentiates PHA from its peers” and signifies
that we execute our mission “in a fiscally
responsible way.”
For more information, go to
www.PHAssociation.org/CharityNavigatorRating w
38
Building Medical Education in PH events are designed
to foster partnerships between PHA and PH centers to
promote continuing education in the field of pulmonary
hypertension through CME educational events. The
Building Medical Education in PH program is a benefit
to members of PH Clinicians and Researchers and PH
Professional Network. To partner with PHA in Building
Medical Education in PH for your upcoming CME event,
please contact Suzanne Flood, PHA’s Marketing &
Communications Manager, at 301-565-3004 x768 or
[email protected].
June 22-24, 2012
Renaissance Orlando at SeaWorld®
Orlando, Fla.
Visit www.PHAssociation.org/Conference
and learn about the latest breaking news
about Conference by signing up for our
early alert email list!
Photo courtesy SeaWorld®Orlando
phenomenal
youth
Camille Frede, Youth Editor
[email protected]
Interview with PH Patient
Kendra Sullivan
Interview conducted by Mira Kruger
PHA Pathlight Volunteer
Where do you live?
I live in Port Angeles, Wash.
How old are you?
I am 11 years old.
When were you first diagnosed?
I was diagnosed in the summer of 2006, right before I started second
grade.
When did you first start having symptoms of pulmonary
hypertension?
I had my tonsils taken out, and my oxygen levels kept dropping after that
surgery.
Try writing haiku
About your life with PH
Pen, pencil, online
H
aiku are short poems that only
have three lines. The first line
has five syllables, the second has
seven syllables, then the third has
five again.
Tip for counting syllables:
put your hand under your chin.
Every time your chin goes down,
that’s a syllable.
Send your haikus to Kids@
PHAssociation.org, or submit them
online at www.PHAssociation.org/
PHKids/Submit!
The haiku challenge
Can you write a haiku now?
Let’s see you try it.
What were your symptoms?
I don’t really remember having symptoms, but my mom said I used to just
stop sometimes while I was playing.
What activities do you like to do?
I love to read and color. I also like playing on the computer and riding my
adult-sized tricycle.
Have you ever felt unable to do something because of PH?
I can’t play sports, but that’s okay because I don’t really like sports
anyhow. I can still play on the swing at the park, though, because I have a
backpack for my oxygen.
How has your life changed since you’ve been diagnosed with PH?
I am homeschooled now because going to school full time was too tiring. I
like being homeschooled because I can work on what I want when I want.
What is a message you’d like to pass on to other kids with PH?
Don’t worry if you have to get a central line. It might bother you a little bit
at first, but it doesn’t hurt. Sometimes I even forget it’s there.
39
PHENOMENAL YOUTH
Words Can Hur t Sometimes
“C
an I ask you something? I
Having PH, I know that there are
don’t want to make you mad
people out there who get comments
or hurt your feelings, but I’m
about the IV tube coming out of their
just curious,” a girl asked me one day
shirt. I know the pain, sadness and
after school.
self-consciousness that come from
“Here it comes. She is going
these insensitive questions/comments.
to ask about my health,” I thought to
However, when people ask questions
myself. I can always tell when people
or say something that seems rude or
are going to ask a question about my
insensitive, I remind myself that they
health. Almost everyone starts off with
most likely did not mean to be rude. I tell
“I don’t want to be rude, but can I ask
myself that if I answer their questions
you something?” The questions are
with a smile, then I can help bring
usually about the big, bumpy, bright
awareness to PH.
Becca Atherton
pink scar I have going down my chest,
I urge all of you, the next time
or why my voice sounds so raspy. Both are from multiple
someone makes a rude or insensitive comment about
open heart surgeries to replace my pulmonary valve.
how you wear oxygen, have a tube coming out of your
While this girl was sensitive towards me and my feelings
shirt or why your lips look blue, kindly turn to them and
before asking about my health, I have had incidents
explain what is going on with your body. We can make
where other people are not as sensitive. I have had
a difference in the way the world sees those who are
people make comments such as: “So you don’t mind
different by sharing our stories of survival. w
drawing attention to your scar?” I even had someone
By Becca Atherton
look at a picture of me, put her hand over my scar and
PH Patient
say, “You’d look way better if you didn’t have that.”
There are times when I know that people are
Meet Becca and other teens who have PH at making comments just to be mean and hurtful. I still
www.PHATeens.ning.com. PHA Teens is a secure social
don’t understand why people say the things they say.
networking site for teens age 13-18 who have PH.
Maybe they aren’t thinking before they speak. I’m not
sure, but I do know that I want people to realize that
words, even if you don’t mean them in a rude or nasty
ecca won a 2011 Person of Character Award at her
way, can and do hurt people. And they do make people
high school in Scottsdale, Ariz. Recipients of this
feel uncomfortable and sometimes even ashamed of not
award “believe in the inherent dignity of all people
only themselves but their own body. Sometimes I don’t
and treat everyone with respect, even those whose
like how my body looks. There are times when I wear a
ideas and ideologies evoke strong disagreement. They
bathing suit in public and I can’t help but feel insecure
have a strong sense of right and wrong and have the
when I look at all the girls who have chests without a
courage and willpower to do the right thing even when
bright pink scar going down the middle. But I have grown
it is unpleasant, costly or goes against what others
to accept my scar and how my body looks. It has taken
are doing.” Becca’s award includes a scholarship for
me a while to get to where I am today. Do I like my scar?
college. Congratulations, Becca!
Heck no. But I am glad I have it, because it means I am
alive.
B
talk back!
This is your space.
Send your jokes, cartoons, drawings, poems, questions, comments or ideas for future
articles to Michal. She can be reached by phone at 301-565-3004 x800 or email at
[email protected].
40
Family PHocus
G r o w i n g I n d e p e n d e n t t h r o u g h Te c h n o l o g y
M
y daughter Camille was diagnosed
She can schedule appointments discreetly
with pulmonary hypertension
without calling the specialist’s office in
17 years ago. When she began
front of her roommates. It allows her to be
attending college, we wanted to improve
independent and travel. Most importantly, it
the connection between our daughter and
has allowed her to develop an independent
her PH specialist. This was particularly
relationship with her specialist.
important to us given that under HIPAA
If a situation comes up while she is
privacy laws, the doctor needs permission
away from home, she feels comfortable
to talk to us as parents about any medical
calling her specialist. In emergencies, she
information.
knows not to rely on email. Email allows
Although Camille was comfortable
her to ask questions before a situation
communicating face-to-face with
arises in which she does not know what to
Camille (right) with her PH specialist
Dr.
Aaron
Waxman
her PH team, transitioning to phone
do. Having this connection has been a relief
communication was a challenge. Early on, we began
for us as parents.
encouraging her to call her specialist if she had questions or
When Camille was traveling south and wanted to know
concerns, but Camille always found excuses not to call.
whether the ocean or the pool would be safer for swimming,
Then we thought: how do we make it easier for her
her specialist strongly advised against swimming in the ocean,
to communicate with her physician? She enjoys texting or
describing it as a “soup of bacteria.” His words convinced her
emailing. Camille’s specialist agreed to share his email
not to try it, whereas she might have ignored the same advice
address, and emailing seemed less imposing and more
if it had come from me.
comfortable to her than talking on the phone.
Letting Camille become independent and travel by
Once she became comfortable emailing her specialist,
herself has been difficult for me as a parent. The first time she
we focused on providing Camille with a data plan so that
was planning to fly by herself out of state, I was so anxious
she could write and check emails on her phone. Her college
that I almost canceled the trip. Her specialist reassured me
connected her with a federal program under the Federal
plans were in place in case anything happened, and the trip
Rehabilitation Act of 1973 that helps students with disabilities was a success. Being able to share my concerns and knowing
afford items that support their college career. Camille’s
we weren’t alone in making the decisions was comforting. As
specialist wrote a letter requesting that the program cover the
a parent, watching Camille become more independent through
cost of her cell phone data plan.
life’s experiences has been a dream come true. w
Having email access on her cell phone allows Camille to
communicate with her PH team without pulling out her laptop.
By Nancy Frede, Mother of PH Patient Camille Frede
Connect with Other Parents of Kids with PH through PHA’s Parents Telephone Support Group
“For months after [my daughter’s] diagnosis, I couldn’t find
anything. [I appreciate] getting to talk with other parents, and
you have good speakers, good topics. Every time I hang up, I
have learned something or I just feel better.” ~ Jane
The Parents Telephone Support Group calls offer a tollfree telephone support group for caregivers of children with
PH. Calls are held on the third Thursday of every month at
8:30 p.m. ET/5:30 p.m. PT.
Upcoming calls:
July 21, 2011
Aug. 18, 2011 Sept. 15, 2011
Oct. 20, 2011
Check the upcoming schedule, including topics and
speakers, anytime at
www.PHAssociation.org/Parents/Support
41
Passages is PHA’s way of honoring those who have lost their battle with PH, as it has been since the very first Pathlight
was published in May 1990. As we learn of patients’ passing, we inform the PH community. PHA extends sympathy to
the families and friends of those who are gone but not forgotten; each Pathlight is dedicated to their memory.
Helen Ahwesh
Doris Anderson
Arlene Berry
Odessa Betteridge
Barb Bostian
Rebecca Joy Butler
James Blaine Butts, Jr.
Rhonda Bye
Gary R. Cardwell
Ken Charity
Kathleen Craigens
Ryan Corr
Robert N. Cox
Patricia June Drury
Barbara Goodin
Aurora Gonzalez
Jennifer Grote
Amy Deann Hatchcock
Frank Hetrick
Sharon A. Johnson
Debra Lynn Jones
Sylvia Lerma
Lois Koch
Rhonda Lowery
Julia Lunke
Linda Muniz-Azevedo
Frank Putney
Robert Rosene
Chuck Sadler
Lynda O. Sawyers-Willis
Kimberly Scott
Michael P. Smith
Julian Willis
Joan Winters
Bernadine Young
The accuracy of this list is very important to us. Please contact the PHA office at 301-565-3004 x756 or
[email protected] to have a recently deceased loved one’s name listed in Passages or to report errors or omissions.
For those for whom it would be helpful, PHA has developed a resource, Mourning a Loved One: A Guide to Grieving, which is available at
www.PHAssociation.org/Caregivers/Bereavement. For more information, or to request a print version of this guide, please contact
[email protected] or 301-565-3004 x800. We welcome all loved ones to remain a part of our community for as long as it is beneficial.
In memory of
DONATIONS LISTED WERE RECEIVED Between March 1, 2011, and May 31, 2011.
PHA IS DEEPLY GRATEFUL TO THE PH COMMUNITY FOR ITS EXTRAORDINARY SUPPORT.
Take a Look! Sustainers Circle Members Recognized 
PHA now recognizes members of our Sustainers Circle in the donations lists. Look for a  symbol to see
who has made a sustained commitment to donate to PHA on a monthly basis. If you are not a member of
our Sustainers Circle but are interested in joining, visit www.PHAssociation.org/Donate/SustainersCircle or call
Jennifer at 301-565-3004 x756. You may also use the remittance envelope enclosed in this issue of Pathlight.
DeLores Aaron
Mr. Paul R. Belting
Ms. Janice F. Howd
Ms. Rose N. Johnson
Maritza M. Alicia
Mr. Chritopher Erdman
Monica G. Allen
John and Patricia Allen
Mr. Peter Marino 
Mr. and Mrs. Jack J. Marino 
Mr. and Mrs. Ronald G. Robinson 
Juanita Anderson
Mrs. Tammy Chapman
Mayer Armbust
Summerset Kare Bears
Taryn Auten
Mrs. Mary Davis
Danielle D. Babo
Brian and Maureen Babo
Ms. Rachel Karbowski
42
Bill Ball
Mrs. Susan Ball
Kerry K. Bardorf
Don and Betty Hull
Carolyn J. Barra
David and Barbara Barra
Dorothy M. Barry
Kathleen and Justin Ruel
Hope C. Bennett
Lisa W. Wheeler, MT 
Arlene Berry
Mrs. Phyllis Berry
Mr. Robert M. Boyd
Mr. Evan Erwin
Mrs. Peggy Longnecker
Dorothy I. Berube
Mr. Roland J. Berube
Gloria Biesemeyer
Ms. Kami Biesemeyer 
Candi C. Bleifer
Ms. Susan L. Salay
Gilbert L. Blew
Ross and Karen Gibson
Wendy S. Bockhorst
Mr. Jim Sheerin
Julia Bogdan-Rollo
Mr. and Mrs. Brian D’Andrea
Mr. Charlie Dubovici
Mr. Abner Figuereo
Master Chuck Wagner
Ruth Bonar
PH Support Group: Iowa
Rebecca Joy Butler
Rick and Kathy Brown
Mr. Peter A. Comilla
The Cullen Family
Stanley and Pauline Cychowski
Mr. and Mrs. Lee M. Davis
Dr. P. Candace Deans
Delta Zeta Epsilon Sigma Chapter of
Wayne State University
Mariann and Dennis D’Hondt
Mr. Ranjan D’Mello
Ms. Cathleen Dueweke
Ms. Jacqueline F. Floyd
Ms. Viola Hadgikosti
Mrs. Melora Hamann
Kostantinos and Deborah Kapordelis
Angela, Chuck, Elizabeth Anne and
Matthew Kennedy
The Larson Santrock Family
Mrs. Lin Leong
Thomas and Cheryl Liebold
Michael and Janet Moore
Mrs. Terri Morath
Mrs. Diane M. Richards
Mrs. Lydia B. Rustmann
Mrs. Carol Sanders
Mrs. Therese Schrage
Mrs. Cheri Trefney
Miss Patricia Wiley
Joan Butlien
Mrs. Dolores Borman
John and Grace Hyslop
Ms. Eleanor Reichert
Ms. Debbie Wickersham
Ms. Alyx Wolford-Holiday
Mr. John Yoo
Marion J. Cairns
Ms. Carla Cairns
Gary R. Cardwell
Kenneth and Peggy Allen
Robert and Joanne Bailey
Robert and Jacquelyn Campbell
Ms. Linda Cantu
Mrs. Mary Cardwell
Mary Jo and James Chignoli
Donna and William Crossen
Susan and Scott Crowther
David and Nancy Cyplick
Gael and Jack Dillon
Ms. Ardith D. Efner
Richard and Susan Englund
Daniel and Jane Fahrner
Susan and John Gerovasil
Mary Lou and Leslie Gomora
Cynthia and Patrick Gonzalez
Lorayne and Jeffrey Goodspeed
Gary and Beverly Govoni
Kimberly and Eric Gray
Christine and James Hammerlund
Ms. Jacqueline Hickey
Ms. Patricia A. Hickey
Ms. Michelle L. Hulke
Mrs. Denise M. Issert
Ms. Lisa A. Johnson
Linda and Thomas Kapfer
Eleonora and Jay La Fontaine
Mr. Craig P. Lennon
Agnes and James Limacher
Ms. Mary A. Macier
Ms. Julie Manner
Mr. Vincent K. McGirr
Ms. Roberta Meyers
Mr. and Mrs. Charles Novak
Karen and Dale O’Connell
Mr. and Mrs. William F. O’Donnell
Kathryn and Henry Offerman
Mr. Rick Papp
Ms. Catherine Phelan
Ms. Carol Reeb
Maureen and Robert Rossi
Jeanne and William Rourke
Susan and Andrew Runde
Ms. Patricia A. Ruth
Ms. Leila M. Ryan
Raymond and Rita Slattery
Linda and James Whitgrove
Lawrence and Susan Wiers
Nicole and Michael Wight
Richard F. Carney
Mr. Christopher R. Barror
Mrs. Pamela Wright
Angelyn Casida
Col. Gary V. Casida 
Jason and Christina Horn
Kenneth Charity
Ms. Noel Holly
Mrs. Christina Morres
Mrs. Carol Nix
Ms. Arlene Sontag
Joan M. Cole
Mr. Paul M. Cole
James W. Coleman
Mrs. Sarah Boyd
Mr. and Mrs. Baird Couch
William and Mary Alice Coudreaut
Rick and Margo Diener
Mr. and Mrs. Joel Duncan
Mr. and Mrs. Peter Gatti
Mrs. Jeanette Gennarelli
Ed and Mary Gooding
Arlene and Carmen Hagelgans
Mrs. Katherine Haney
Treva and Roger Horner
Louisa and Mitchell Jordan
Mrs. Janet Keller
Bill and Carrie Long
Ms. Doreen McDermott
Jacquelyn and Jim McKnight
Ms. Shirley Murphy
Cliff and Carletta Obermeyer
Mr. and Mrs. Jim Ochiltree
Ms. Patricia O’Connell
Mr. and Mrs. Frank Pampalone
Karen and Richard Sulyma
Mrs. Dee Todd
Mrs. Lynda Trudgen
YMCA of Wilkes Barre Inc.
Judith Colgan
Marchelle Corbett
Brian and Mary Jo McDonough
Albert Cordeiro
Alorica, Inc.
Susan and Ray Chaput
Mrs. Eileen B. Chaput
Herbie and Anita Cordeiro
Urban and Elizabeth Cordeiro
Ms. Dealinda Costa
Fernando and Rosa Da Costa
Lou and Carol Rohs
Mrs. Pixie K. Zimmerman
Ms. Dolores Zompa
Kelli Cornett
Allan and Virginia Cornett
Kristen Cote
Alorica, Inc.
Susan and Ray Chaput
Mrs. Eileen B. Chaput
Herbie and Anita Cordeiro
Urban and Elizabeth Cordeiro
Ms. Dealinda Costa
Fernando and Rosa Da Costa
Lou and Carol Rohs
Mrs. Pixie K. Zimmerman
Ms. Dolores Zompa
Christen W. Cranford
Ms. Joy W. Saville
Leigh A. Culmer
Ms. Carla Farr 
Debra A. Curran
Ms. Lorine Hughes 
Jean P. D’Antona
Mrs. Debbie Henley
Deborah L. DeFrancis
Mr. John DeFrancis
Gregory A. Dembski
Ms. Linda R. Delaney
Christa L. Doose
Mr. Willy G. Lignau
Dolores Doria
Ms. Laura Doria-Djenfer 
Tricia Dorrell
Charles and Eileen McCoy
Diane Doumeng
Mr. Robert J. O’Hare
Patricia J. Drury
Joe and Diane Berberick
Mrs. Stacie Doyle
John and Patricia Eakins
Mrs. Joan L. George
Mr. Michael Howe
PATHLIGHT SUMMER 2011 Ms. Nancy A. Howe
Mr. Joseph Howe
Mrs. Nancy G. Kamm
Norman and Mary Ann Kampschror
Mr. Gilbert Lederhos
Ms. Thelma Lederhose
Mr. William Maywhort
Peliton Insurance
Patricia A. Duff
Mr. Wayne Duff
Bonnie Dukart
Ms. Renee Chirtel
Ed and Judy Simpson 
Mr. Stuart D. Smith
Maryann Dunlap
Mr. Charles K. Aaron
Thomas and Carol Barber
Mr. John Blakley
Bill and Maggie McElroy
Mrs. June Nickell
Larry and Joan Pepe
Ms. Jenny Reyes
Gabriel M. Duque
Mrs. Mary D. Cohen
Gretchen and Michael De La Torre
Patricia and Thomas Dickson
Mr. Floyd C. Lewis
Chad Ellenwood
David and Connie Sacherman
Allison Erb
Mrs. Heidi Baker 
Susan Eschbach
Mr. and Ms. David Eschbach 
Mrs. Elizabeth Melady
JoAnne R. Eshleman
Mr. Dallas O. Eshleman
Jeanne Fair
Mr. and Mrs. Dennis M. Mullen
James F. Farrell
Joseph and Ann Farrell 
Tiffany M. Fasci
Mrs. Debra Testement 
Rochelle Fink
Ms. Laura Glassman
John R. Fleenor
Mrs. Nancy M. Fleenor
Laraine Fondiler
Mr. and Mrs. Brad Fondiler
Peggy L. Fox
Ms. Kimberly S. Croll
Florence S. Frankston
Mr. Frank D. Frankston
Barbara Fredritz
Mr. Mark Fredritz
Tiffany L. Garza
Ms. Linette Connick 
Mona J. Gasca
Ms. Aliya Gasca
Mary E. Geisdorf
Miss Phyllis Geisdorf 
Ellie Godina
Ms. Kathleen Aitken
Ms. Traci Aldrich
Ms. Pamela J. Anderson
Mrs. Heather Andrasak
Mr. Mark Andrasak
Mrs. Beth A. Armbruster
Mr. Matt Armbruster
Ms. Janet Arnett
Mr. Ron Arnett
Mr. Michael Arnett
Ms. Pamela Arnold
Baco Manufacturing Corp.
Mrs. Mary Bailey
DONATIONS : IN MEMORY OF
James B. Butts
Mrs. Stacey Alexander
Mr. Kadel L. Matthews
Rhonda Bye
Mr. Darren Clark
Mr. James Foster
Ms. Peggy Langille
Mrs. Donna Levesque
Mr. and Mrs. Robert Nunnally
Mrs. Laura Rizer
Mrs. Pat Stewart
Taylor R. Caffrey
Ms. Geralyn Arrieta
Mr. Peter Belinsky
Ms. Susan Bissonnette
Mr. and Mrs. Ron Blades
Ms. Leida J. Bucago
Mr. and Mrs. Michael Caffrey
Ms. Patti Caffrey
Ms. Lydia Cao
Ms. Karen Capozzi
Creative Entertainment Investment
Group, Inc.
Ms. Laura Curfman
Laura Hoyt D’Anna, DrPH 
Ms. Mayra DaSilva
Ms. Diane Davis
Ms. Brenda De La Rosa
Deep Dog Yoga
Mr. Adam Deskus
Ms. Rosalena Evans
Mr. Suk Ferguson
Ms. Christine Garcia
Ms. Joyce Greenway
Ms. Frances Guyett
Hands on Wellness Center
Mr. Tim Hanly
Ms. Beatrix Hauptmann
Ms. Cheryl Holstrom
Ms. Julie Jensen
Ms. Ann Johannsen
Ms. Laura Johnson
Ms. Kelly Jurica
Ms. Julie Kenney
Mrs. Janelle King
Ms. Peggy Kocina
Ms. Jessica Krause
Kroger
Ms. Suzanne Martin
Mr. Frank Martinez
Mr. and Mrs. Roman Martinez
Mr. and Mrs. Scott McGuire
Ms. Alisa Mendes
Ms. Renee Mihalovich
Ms. Carina Minardi
Mr. Phil Moores
Mr. Norman Nelson
Ms. Jacie Prieto-Lopez
Mr. Jared Ross
San Antonio Church
Ms. Laurel Schuman
Mr. Shawn Sinclair
Ms. Erin Smith
St. Paul’s Lutheran Church
Mr. Gary Stell, Jr.
Ms. Lisa M. Sturk
Ms. Julie Townley
Ms. Jami Tyler
Mr. Steve Van Loan
Ms. Jennifer Vento
Ms. Diane Viadero
Ms. Amber Weddle
Ms. Diane Westermann
Ms. Rhonda Whittier
43
DONATIONS: IN MEMORY OF
Ms. Marcia A. Bako
Mr. Gregory Ball
Ms. Melissa A. Ball
Mrs. Tracy M. Ball
Mrs. Bernadette Banas
Ms. Christine Banc
Mrs. Patricia Barbieri
Ms. Arcangela G. Barnicky
Ms. Meghan Baron
Mrs. Suzanne D. Bartolotta
Mrs. Rose Bartow
Mr. Michael Beck
Mrs. Debbie Beemiller
Mrs. Joyce Beesley
Mr. Bill Behrens
Mrs. Jeanette M. Bejot
Mrs. Linda Bergoc
Ms. Carrie A. Biddle
Mrs. Regina Boone
Mrs. Ann Bordonaro
Ms. Jean C. Bourgeois
Ms. Kelly Braddock
Ms. Patricia M. Brent
Ms. Sharon Brodsky
Mr. Andrew Brown
Ms. Elaine Brown
Mr. Jon Buchner
Mrs. Mary Anne Burya
Ms. Marina Cabral
Mr. and Mrs. Michael Caffrey
Ms. Sheila Campbell
Ms. Marla M. Campbell
Mrs. Maureen Campbell
Ms. Barbara A. Carney
Mr. Jack Carroll
Mrs. Christin Carroll
Ms. Mary Beth Carter
Mrs. Jodi R. Caruso
Mrs. Mary Jo Cassese
Ms. Andrea Celico
Mrs. Marge Centa
Ms. Heidi L. Cerbin
Ms. Charlotte Cervella
Mr. William R. Cervenik
Mr. Patrick Cervenik
Mrs. Mary Chinchar
Mrs. Dawn Marie Chinchar
Mr. Douglas W. Chinchar
The Cindric Family
Ms. Kelly Clark
Mrs. and Mr. Vickie Clark
Mr. Kevin Clarke
Mr. Jeff Clarke
Mrs. Melissa Clarke-Godina
Mrs. Barbara A. Clausing
Mr. Bob Clifford
Mrs. Sharon L. Cogar
Collinwood Memories Jr. Club
Mr. Dan Compton
Mrs. Christine M. Conway
Mrs. Polly E. Cool
Ms. Melodie Cool
Mrs. Katie Corbett
Mrs. Lynda Corea
Mrs. Shelley A. Cosmo
Mrs. Kristen Coyne
Mrs. Helma U. Crahen
Ms. Laura C. Crotty
Ms. Julie Dacar
Ms. Mary Dadaian
Mr. Matthew Dane
Mrs. Emily Dautovic
Mrs. Michelle Davis
Mrs. Yvonne Debelak
44
Ms. Rena Defife
Dr. Barbara Dennis
Ms. Maureen DeVito
Ms. Rita Diana
Ms. Kristina Diana
Mr. Mark Dicker
Mrs. Roberta Dieringer
Mrs. Antonina Digulis
Ms. Megan Disch
Miss Julia Dolce
Ms. Mary Jo Doley
Mrs. Mary Dolsen
Mrs. Kristi Draper
Ms. Melanie Duffy
Mrs. Patty Dunmire
Mrs. Kate Eppich
Euclid Firefighters Local 337
Mrs. Annemarie Finch
Miss Sarah Finch
Ms. Elizabeth Findura
Mrs. Lisa A. Flachbart
Mrs. Kathy Fleck
Mr. Jim Forbes
Ms. Amy Forkins
Ms. Kristen Fortuna
Mr. Chris Foster
Mrs. Judy Freedman
Mr. Terry L. Freeman
Mrs. Bonnie L. Friedrich
Mrs. Tamara M. Fulkerson
Mrs. Pamela Fynes
Ms. Dorothy F. Gaebelein
Mrs. Karen M. Gainford
Mr. Robert F. Gambatese, Jr.
Mr. Lee Gardella
Mrs. Elizabeth Garin
Mr. John Geisman
Mrs. Mary E. Geosano
Ms. Laura German
Dr. Cynthia Gherman
Ms. Elizabeth Gilan
Gilead Sciences, Inc.
Mrs. Sylvia P. Gliebe
Ms. Beth Godina
Mr. Robert A. Godina
Mr. Vince Godina
Mr. Mark Godina
Mr. Vincent Godina
Mrs. Kathleen A. Gonakis
Ms. Angela Gowdy
Mrs. Kathy Grabowski
Mr. and Mrs. Ted Grabowski
Mr. David Grady
Mrs. Barbara J. Grecar
Mrs. Karen Greenway
Ms. Margaret Gretz
Mrs. Karen M. Greulich
Mrs. Evonne Gundic
Mrs. Jean Hadney
Mrs. Mary A. Hadney
Ms. Lauren E. Hadney
Ms. Lisa Hahn
Mr. Paul A. Hale
Mrs. Elizabeth Haller
Mrs. Susan M. Hamilton
Col. Thomas E. Hanlon, Ret.
Ms. Therese Hanson
Mrs. Dawn Hartman
Mr. George Hawk
Mr. Erik Hellier
Ms. Sharon Hensel
Mrs. Laura Hixenbaugh
Mrs. Catherine C. Hlavka
Ms. Laura Hoag
Mrs. Erin C. Hoffman
Mr. Matt Horton
Mr. Robert Hostetler
Ms. Julie Howes
Mrs. Somier Hoy
Mrs. Doris A. Hug
Ms. Debora A. Hula
Ms. Tanya Humphres
Mrs. Christina Ice
Mrs. Kathleen O. Jandrey
Ms. Colleen Jasinski
Ms. Dianne L. Jazdzyk
Ms. Jennifer Jesberger
Mrs. Opal D. Johnson
Mrs. Deborah Johnson
Mr. Joffrey Jones
Mrs. Kris Kalinic
Mr. Patrick Kander
Ms. Marcy Kane
Mrs. Diane Kane
Mr. James Kasper
Ms. Maria H. Kasper
Mrs. Diane L. Kasper
Ms. Cherie Kau
Mrs. Michelle Kavulich
Mr. Grant Keating
Ms. Kathleen M. Keaveney
Ms. Diane Keenan
Mrs. Carol Keller
Mrs. Betsy Kennedy
Ms. Deborah A. Kersman
Ms. Karen Kilkenny
Mr. Matthew King
Ms. Lana Kinnal
Mrs. Trisha Kirchner
Ms. Jill Klemm
Ms. Claudia Koler
Ms. Katherine M. Komar
Mr. Michael T. Korth
Mrs. Kabara Korth Praskavich
Mrs. Lisa A. Krakowski
Mr. Craig Krejci
Ms. Gloria J. Krob
Mr. Slavko Kucinich
Mrs. Anne M. Kumel
Mrs. Lisa Kuta
Ms. Bridgette A. Lang
Mrs. Lynne Lang
Miss Sara Lanzola
Miss Emily Lanzola
Ms. Nancy L. Lanzola
Margaret and David Lanzola
Ms. Debbie Larch
Larmco Windows
Ms. Mia Laureinzo
Mr. Mario Laush
Law Office of Joseph Raymond Skrha,
Esq.
Ms. Melissa Lear
Mrs. Justine M. Leinweber
Mrs. Jennifer A. Leyrer
Mrs. Joyce Ann Leyrer
Ms. Misty Lichvar
Mrs. Maureen Lippert
Mr. Paul Lonsway
Mr. Louis Loparo
Loreto Development Co., Ltd
Ms. Linda Lupton
Ms. Kelly MacDonald-Tomaselli
Mrs. Ruby M. Macejko
Ms. Laura Mack
Ms. Melinda M. Madej
Mrs. Dina Magruder
Mr. Marley Magruder
Ms. Christine Mahaffey
Mrs. Debra Malinowski
Mr. Marc Malinowski
Mrs. Kathleen Manganella
Mr. John Marinelli
Mrs. Ciara Marra
Mr. Keith W. Martinet
Mrs. Cyndi Martony
Ms. Sherri Martz
Mr. Brian Mathews
Miss Maggie Maurer
Mrs. Holly K. Maurer
Mrs. Denise McBee
Mrs. Tamara McCartney
Mrs. Debra McClave
McCormack Family Chiropractic, Inc.
Mr. Donald McCune
Mrs. Patricia E. McDonough
Ms. April McFarland
Miss Nellie McHugh
Ms. Patricia McHugh
Ms. Angela K. McKean
Mr. Mark E. McManus
Mr. Patrick McMullen
Mrs. Emer M. McNamara
Ms. Becky Meduetz
Ms. Nanci L. Meier
Mrs. Denise N. Merkuloff
Ms. Stephanie M. Meyers
Mrs. Susan Miller
Mr. Jeff Miozzi
Mr. Brock Miskimen
Mrs. Shirley Mooney
Mr. Jeff Mooney
Ms. Loretta Moore
Ms. Marge Moore
Ms. Missy Moore
Mrs. Stacy A. Moormeier
Mr. Perry Morehouse
Ms. Melanie Moyer
Mr. John J. Murphy
Mrs. Kelly A. Murphy
Mrs. Jean Murphy
Ms. Cynthia Murray
Mr. John Murzynsky
Ms. Betty Murzynsky
Mr. Michael Nadoski
Mrs. Monica Nardy
Ms. Linda Nardy
Mr. Martin J. Norsic
Mr. Joe Nosan
Ms. Cheryl A. Novak
Ms. Lynn Novak
Ms. Debbie Novalony
Mr. Charles J. Nusbaum
Mrs. Samantha O’Connell
Mrs. Mary Kay O’Donnell
Ms. D. Oliver
Mrs. Barb Ottman
The Pampered Chef
Mr. Mike Paoloni
Papp’s Body Shop, Inc.
Mr. Paul Pastilong
Ms. Sandra Payne
Chris Peer
Mr. James M. Pehotsky
Mr. Bob Penny
Mrs. Nancy P. Petrov
Ms. Lynn Phillips
Mr. Daniel Pike
Mr. David E. Ploenzke
Ms. Johanna Pockar
Mrs. Patricia A. Posey
Ms. Sandra L. Post
Mr. Vince Sztul
Ms. Kristen Taylor
Mrs. Penny Marie Thomas
Mrs. Deborah Thuma
Tim Nice MD, Inc.
Today’s Lifestyle Construction, Inc.
Ms. Lisa Tomaselli
Mrs. Dawn M. Toth
Ms. Kimberly Tramsak
Ms. Lisa Marie Trebec
Mr. Philip W. Troke
Mr. Bob Troop
Mrs. Nancy J. Trost
Ms. Angela Tucci
Mrs. Sharon A. Turk
Mrs. Tami K. Turner
Dr. Geoffrey Turoff
Mrs. Pamela Turos
United Towing Services Inc.
UPS Staff
Ms. Corie Van Korngut
Mrs. Jane Van Valkenburgh
Mrs. Michele N. VanHimbergen
Mrs. Carol A. VanKorngut
Mr. Thomas S. Verdi
Mr. Frank Villanti
Mrs. Cheryl L. Vitelli
Mr. David Vrabel
Mr. David Wachhaus
Mrs. Debra A. Wachter
McKenna Walker
Mrs. Stacy L. Walsh
Ms. Therese M. Webb
Ms. Marilyn L. Werner
Mrs. Emily Westbrook
Mrs. Kelly M. Wills
Ms. Sarajane Willson
Mrs. Jamie Wilson
Ms. Chanel Wilson
Mr. Tony Winborn
Mrs. Karen Wolf
Mr. Kirk A. Wolf
Mr. Steve Wrenn
Ms. Joyce A. Wright
Mrs. Laura Yama
Ms. Rhonda Yaxley
Mrs. Julia Ann M. Yoe
Ms. Alison M. Zahler
Ms. Rose Zeitz
Dr. John Zielinski
Mrs. Carrie A. Zupancic
Mrs. Ninette R. Zuzek
Aurora Gonzalez
Leyden High Schools
Barbara B. Goodin
Mr. Kevin Benson
Ms. Pauline A. Blum
Dearborn County Hospital
Ruth Ann, Jim and Judy Ebbers
Carol and Urban Ebert
Carl and Vicki Goodin
Mrs. Mary Ann Gordon
Mr. and Mrs. Embry Grimes
Ms. June Heinzelman
Marge and Ray Lehman
Mr. and Mrs. Richard T. Mallon
Ms. Mary Jane Maxwell
Ms. Sharon A. O’Rourke
Paul and Cherie Riestenberg
William and Joan Gail Snider
Ms. Melissa K. Weidmer
James M. Gore
Mrs. Delia Misselbrook
Eve L. Greenstein
Coca-Cola Enterprises, Inc Finance
Department
Dixon Hughes Goodman
The Dunwoody Girl Scout Service Unit
Dunwoody High School Academy of
Finance
Dunwoody High School Student
Government
Dunwoody High School Wrestling Team
Mr. Scott Fisher
Janet and Lou Franzoni
Stephanie and Barry Gang
Mary and George Hamilton
Mr. David Jacobson
Phyllis and Sheldon Kass
Mrs. Stephanie M. Ladden
Berna and Noah Levine
Martha and Neal Miller
Philip and Barbara Nelick
Dr. Robert Neyman
QPM Consulting, LLC
Keith Petroni and Chris Rapalje
Myra Sallet, CPA
Mr. Theron Smith
Debbie and David Strauss
Calvin Guy
Mr. and Mrs. Norman Haller
James M. Hall
Mrs. Velma A. Hall
Cynthia A. Hallett
Mr. and Mrs. Norman Haller
Richard P. Hanna
Mr. John Hawthorne
Ms. Anne L. Solomon
Joseph and Mary-Margaret Wittwer
Sandra Lee S. Harp
Ms. Mary Jan Sawyer
Amy D. Hatchcock
Mr. and Mrs. Mark Sizemore
Fred R. Helms
Ms. Charlotte H. McCabe
Jean Hess
Mr. and Mrs. Rino Aldrighetti
Robert and Mora Bissonett
Ms. Linda Shoop Briggs
Ms. Jeanne Marie Broussard
Mrs. Mary H. Chachere
Ms. Adrienne H. Dern
Mrs. Sharon Grant
Eleanor and Ronald Hayward
Mrs. Diane Henson
Mr. Ed Holtgraver
Mrs. Pallavi G. Homan
Ms. Mavis Kiefer
Ms. Susan Long
Ms. Sharon Hailey Malone
Mr. Jon McAnally
Elva and Russell Nelson
Mr. and Mrs. John R. Pickles 
Mr. Vijai & Moira Prakash
Mrs. Heather Prakash
Harry and Diane Rozakis 
Ms. Carole D. Tyler
Dr. and Mrs. Stephen L. White, PhD
Ms. Betty Lou Wojciechowski 
Mima Hessel
Mr. Gary N. Hessel 
Mallory Hicks
Ms. Teresa Anderson
Mrs. Angie Arneson
Miss Lisa Bauch
Ms. Janelle Beitz
Ms. Edith Ben-Horin
PATHLIGHT SUMMER 2011 Ms. Molly Heidi Berg Heise
Mrs. Carol Birkeland
Ms. Beth Brockland
Mr. Donald Canales
Ms. Haan-Fawn Chau
Mrs. Carrie Duffee
Ms. Nina Erlich-Williams
Ms. Estella F. Esteban
Mrs. Suzanna Evans
Mr. Thomas Fleming
Ms. Jen Foss
Ms. Susan Gordon
Ms. Michelle Griffin
Ms. Carissa Hanson
Mr. Heath Michael Heise
Ms. Heidi Heise
Ms. Sheryl Hess
Mr. Tim Hicks
Mr. William Hoffman
Mrs. Kelly Holdgrafer
Dr. Chris Johnson
Ms. Hallie Jones
Ms. Cynthia Kneisl
Peter and Kimberly Lee
Ms. Melissa Machovsky
Ms. Sylvie Makara
Ms. Jennifer Malone
Ms. Meredith McCarthy
Mrs. Susan Moller
Ms. Maridee Nelson
Mr. and Mrs. Preston Piper
Mr. Paige Piper-Bach
Ms. Gergana Radinova
Ms. Julie Roberts-Piper
Mr. David Rossing
Mrs. Erna Rouse
Mr. Edgar Saenz
Mr. Scott Sheckman
Ms. Deb Skumautz
Mrs. Kelley Skumautz
Mrs. Vanessa Slivken
Mrs. Deirdre Lenihan Sloyan
Ms. Michelle Steffen
Mrs. Leslie Tamminen
Mr. Aram Tatikian
Mr. Peter Tatikian
Mrs. Margie Walsh
Ms. Vicki Wawerchak
Meaghan Hicks
Michael and Cathie Baker 
Mr. Greg Fawcett
Mr. Wayne Wilson
Kirt Higgins
Mrs. Marie Higgins
Judy Marie K. Hockett
Vivian J. Hoff
Mr. William A. Hoff
Caroline Hoffert
Mr. Emil R. Hoffert
Mason E. Hoffman
Mr. Dale Hoffman
Elton M. Holler
Joe Holler, Sr.
Thomas W. Holloway
Ms. Laura Long
Patricia M. Holt
Mr. Douglas L. Holt 
Mr. Jeff Holt
Penneco Oil Company
Nancy C. Horrocks
Mr. Richard L. Horrocks
Ms. Ann Marie Powers
Mrs. Judy Praskavich
Mrs. Erin Quigley
Ms. Megan Quinn
Mr. Howard S. Rabb
Mr. Jeff J. Radachy
Shadi Ramezanzadehnamini
Ms. Merle Reeseman
Mr. John Reeves
Ms. Christina Reynolds
Mrs. Andrea Reynolds
Ms. Karen Reynolds
Mrs. Roberta Ricco
Mrs. Carole Richburg Brown
Ms. April A. Riggs
Mr. Christopher Ringenbach
Mr. John Ringenbach
Robert J. Mack Insurance Inc.
Mrs. Micah M. Roberts
Ms. Nikia Robinson
Ms. Diane Rocco
Ms. Danielle Rode
Ms. Elaine Ross
Ms. Karen Rossman
Ms. Lisa Rulli
Mr. Andrew Samtoy
Ms. Chris Savernik
Mrs. Jennifer Scerbo
Ms. Kristen Schimmelman
Ms. Kim Schimmelman
Mr. Jason Schmid
Mr. Kevin Schmidt
Ms. Cathy Schmidt
Mr. Kyle Schrom
Mrs. Gloria A. Schultz
Mrs. Mary J. Schulz
Ms. Lynn Schutte
Mr. Sam Scibielli
Ms. Barbara Sexton-Perez
Mrs. Louann Shepler
Mr. Michael Shero
Mr. William Shirley
Ms. Susan Siebert
Ms. Gretchen Sikora
Ms. Louise Silvestro
Ms. Lori Silvestro
Ms. Dana Silvestro
Ms. Rosemarie Skladany
Mrs. Jennifer Solema
Mr. Michael Solema
Mrs. Melissa Solema
Ms. Michele Sommerfelt
Ms. Jill A. Sopko
Mr. William J. Spear
Mrs. Stacey Spehar
Ms. Carol Spiker
Mrs. Debbie Spozarski
Mrs. Michelle A. Stachnik
Mr. Philip A. Stark
Mrs. Alissa Stedronsky
Ms. Nada J. Steffy
Mr. Ramon Steffy
Mrs. Deana Stinchcomb
Ms. Beth Stock
Mr. Larry Stout
Mrs. Cindy Straub
Ms. Judy Streller
Mrs. Donna M. Sudar
Mrs. Karen Sudbury
Ms. Laura Sudbury
Ms. Kathleen M. Sullivan
Mr. Tony Sustarsic
Ms. Geraldine Sustarsic
Ms. Sue A. Sutkus
45
Garland B. House
Mrs. Ruth S. House
Rachel Hoyt
Ms. Lynne Fujimoto
Mr. and Mrs. Lee Hoyt 
Ms. Priscilla Monserrate-Sanders
Mrs. Marguerite A. Morel
Ms. Suzanne Padilla
Daniel and Nina Santo
Annette C. Hulsey
Ms. Jackie H. Brown 
Maureen Isaacs
Mr. Daniel W. Isaacs
Michael Javor
Ms. Jacqueline D. Javor
Billie A. Jeter
Mrs. Joan M. Baker
Penneco Oil Company
H. Dean Jeter
Mrs. Dorothy J. Jeter
Ethel Johnson
Mr. Richard C. Koch 
Deborah L. Jones
Ms. Lisa Horton
Kay and Gary Jackson
James Justin
Ms. Jane R. Grissinger
Mr. David P. Justin
Betty M. Kaiser
Mr. Michael Mueller
Lisa A. Kannas
Paul and Alice Heinz 
Richard Kauzlaric
Gennyne A. Walker, PhD
Brenda Kelly
Mrs. Barbara D. Hockaday
Jack E. Keough
Mr. Bryan Beattie
Mr. Tom Harvey
Ms. Teresa Henson
Steve and Sue Martinak
Joan and Louis Roher, Jr. and
Josephine T. Buszuwski
Mrs. Pamela Villanti
Seth J. King
Samuel and Phyllis Jackson
Kelly Kirke
Elizabeth Kirke
Charles Kiser
Mrs. Rosalie Kiser
Kenneth A. Kish
Mrs. Marie Kish 
Teresa Knazik
Larry and Peggie Wessinger
Lois J. Koch
Mr. Richard C. Koch 
Anna Konkel
Mrs. Kimberly A. Currie
Ms. Gloria J. Weins
Tani K. Koppelman
Dr. and Mrs. Mitchell Koppelman
Cynthia and Frank Koppelman 
Mrs. Karen Hopper Labate
Donita L. Kossover
Donita Kossover Memorial Fund
Elizabeth A. Lait
Ms. Charlene M. McElhinny
Natalie Lapidus
Mr. Mark Lapidus 
Alice Leacock
Mr. John D. Leacock
46
Philip H. LeGrande
Mr. and Mrs. Richard Gregory
Robert Lill
Ms. Bonnie Adelhardt-Fetrow
Ms. Shirley Albright
Ms. Sheryn Bryant
Ms. Tina L. Buchanan
Diane and Ronald Goers
Ms. Wilma M. Lill
Mrs. Susan Lill
Mr. Marc A. McGuire
Melissa and James Meritt
Mrs. Carolyn Gene Payne
Glenna and Allen Smith
Juliane A. Lisante
Mrs. Judith A. Lisante
Shelley A. Lisbona
Lakeland National Honor Society
Tim and Medea Valdez
Teresa A. Lovell
Ms. Gayle J. Van Auken
Rhonda Lowery
Janice M. Frederick, MSN, RRT
Mrs. Bettye Lumpkin-Jasmin
Annette Luebker
Mrs. Margaret Frick
James Lundberg
Alice M. Majdecki
Mr. Jerome Majdecki
James A. Martin
Mr. Kevin Curley
Mr. Peter Eyre
Mrs. Brigid Garvey
Ms. Bernadette Gore
Mr. Melvin A. Hokanson
Mr. Robert G. Jamison
Mrs. Carol A. Milner
Ms. Mary Vitelli
Mr. James Watson
White House Real Estate
Heather Massey
Mr. Paul D. Backe
Mr. Robert Becker
Ms. Angela Berndt
Mr. Dean A. Berndt
Mr. William Bockhorst
Ms. Charlotte Boyce
Mr. Michael G. Chow
Annalyn del Rosario, RN
Mr. Gerald F. DeSimone
Ms. Kathy Eckart
Ms. Mary A. Felkel
Mr. Keith Francese
Ms. Kathryn Fujita, PharmD
Mr. and Mrs. Paul D. Harrison
Mr. Steven P. Honma
Mr. Gandalf G. Hudlow
IGT
Mr. Karl P. Iskat
Mr. James R. Jackson
John McInerney Insurance Agency Inc.
Mr. Matthew E. Kinkenon
Ms. Kirsten Koehler
Mr. and Mrs. Daniel A. Leivas
Mr. Scott Lewis
The Living Pages Inc.
Mr. Frank Martinez
Mr. John P. McInerney
Ms. Kristan McMahon
Medco Health Solutions, Inc.
Mrs. Noel Mills
Ms. Doan Thuc Nguyen, PharmD
Mrs. Izabella Nissen
Marilyn I. Nolan, RN
Ms. Diane E. Okada
Mr. and Mrs. George Pantages
Ms. Judy Pantages
Carolyn E. Ritchie, RN, BSN
Mrs. Katrina Sherfey-Hinds
Mrs. Anita Smith
Mr. Kostyantyn S. Snisarenko
Dr. Monique Stanfield
Stimson Enterprises, Inc.
Mrs. G. M. Strong
Mrs. Jeane M. Szwarc
United Therapeutics Corporation
Mr. and Mrs. Steve Van Wormer
Mr. and Mrs. Terrance J. Ven Rooy
Ms. Judy C. Walker
Ms. Linda Wells
Mr. Dan Yanez
Mark Matonti
Nick and Jane H. Dallis
Mr. and Mrs. Thomas J. Ficker
Ms. Lorraine Lagarde
Maribeth S. McCarthy
Ms. Jean Sheridan 
Deborah McClung
Karen and Mark Stanfill
Amy McDonough
Brian and Mary Jo McDonough
Michael McKenzie
Mrs. Kim Lauer
Mrs. Margaret T. McKenzie
Mr. Dennis Treat
Gisela M. Meridith
Mr. Jerry R. Meridith 
Ellen Miller
Ms. Elayne E. Gray
Gabrielle Miyara
David Cometz and Jacquelyn Egan
Ms. Lynne Fujimoto
Ms. Priscilla Monserrate-Sanders
Mrs. Marguerite A. Morel
Ms. Suzanne Padilla
Daniel and Nina Santo
Caroline J. Morgan
Mrs. Mary M. Joy
Jennifer E. Moser
Rebecca M. Yates, RN
Michael J. Muszynski
Mrs. Julie M. Wostbrock
Marilyn J. Mutter
Mr. James Schnabel
Melvin Newman
Mrs. Shirley Newman
Michael J. Nuzzi
Hammond’s Body Shop, LLC
Mr. Joseph Hasson
David and Kristen Rieth
Kathleen O’Hara
Linda and Michael White
Joanne C. Olson
Mark Baldwin and Carla Olson 
Ann S. Packard
John M. Packard, MD
Laszlo Pataki
Edward Leske Company
Sarah Peek
Dave and Michelle Peek
Paula Pepe
Ms. Teresa A. Delorenzo
Ann O. Picchione
Mr. John E. Baldwin
Ms. Mary F. Carmody
John and Mary Connor
Ms. Gretchen A. Ford
Mrs. Nancy O. Mathieu
Ms. Meredith A. Moody
Mr. Richard C. Pillsbury
Diane and Stephen Sullivan
The Winter Family Foundation
Helen Pine
Ms. Jennifer Pine
Eugene F. Piscitelli
Miss Maureen Hennessy
Mrs. Marion Kovach
Ms. Marcia Reid
Mr. and Mrs. Terry Stanley
Mechthild M. Pladars
Mr. Valts Pladars
Kari Posekany
Barry Boilson, MD 
Barbara A. Purcell
Ms. Barbara J. Batzer
Franklin G. Putney
Mr. Perry Mamigonian
Mrs. Joy Morgan
Patricia Ramos
Mr. Alan Hess
Ms. Melissa R. Reiter
Susan A. Redman
The National Board of Boiler &
Pressure Vessel Inspectors
James Regan
Mrs. Denise Regan
Charles Rettmeier
Mrs. Jean C. Geraerdts
Barbara S. Reynolds
Mr. George H. Reynolds
Hubert M. Roberts
Ms. Zenaida Fernandez
Mr. Rene Ramos
Buddy Robertson
Dr. and Mrs. Melinda Stasch
Deborah M. Roettgers
Mr. and Mrs. Thomas L. McKeown
Charlotte Rogers
Mr. and Mrs. Wayne McCallion
Jan Rollison
Mr. and Mrs. Tom Hamby
Margaret L. Roos
Mrs. Kathryn Manley
Donald J. Roscelli
Ms. Jane L. Thomas
Robert Rosene
Mrs. Brenda Anderson
Mrs. Bonnie L. Baird
Mrs. Christina K. Coffman
Mrs. Loretta K. Durden
Mr. Paul L. Erickson
Ms. Audrey Gibson
Mrs. Janet K. Johnson
Mrs. Elsie M. Mace
Ms. Kay Ann North
Ms. Arlen Long Poock
Mrs. Nadine Rosene
Ms. Julie R. Thompson
Jason Rozakis
Harry and Diane Rozakis 
Charles A. Sadler
Cogan & McNabola, PC
Mr. Bruce Dunbar
Mr. Jeffery Harlan
Ms. Michele Khim
Ms. Beverly Kinney
Ms. Jill Kinney
Mr. Douglas Kinney
Michael P. Smith
Ms. Mary J. Murray
Amy C. Stamp
Mrs. Nancy Bair, RN, MSN, CNS
Lloyd and Patricia Kibbe
Ms. Merle Reeseman
Bonnie D. Steadman
Mr. Robert W. Steadman 
Mary T. Steele
Ms. Lori Dow
John J. Greene, Esq.
Joyce A. Stevens
Mr. Vaughn M. Stevens
Ms. Daryl B. Whitt
Nedra A. Strawn
Angelique Stubbs
Mrs. Cheryl Eagy 
Joy C. Sullivan
Ms. Remiliza Cristobal
Laraine Tay
Ms. Linda M. Pierce
Nicholas Tedesco
Mrs. M. Clara Tedesco
Patricia H. Terry
Mr. James K. Terry
Arnold J. Timm
Mr. and Mrs. Arnold H. Timm 
Sarah Townsend
Ms. Leslie Polss
Alexa Tunitis
Mr. and Mrs. Daniel R. Wheeler
Joseph Tymczyszyn
William and Cheryl Tymczyszyn
Sophia Volino
Mrs. Kimberly A. Currie
Mrs. Brenda M. Kolibas
Barbara Wallace
Mrs. Dawn Evans
Amanda Weber
Mr. Anton Weber
Cristin Lynn White
Bowling Green R-1 High School
Volleyball Team
Annette B. Whitney
Ms. Katharina Fuller
Mrs. Joyce Gerlak
Ms. Sarah J. Randles
Mr. Douglas R. Whitney
Shawn J. Wiggins
Shirley L. Wilhite
Mr. Raymond A. Wilhite
Delaysia Williams
Ms. Miroshala Allison 
Julian Willis
Mrs. Annamaria Augustine
Mr. Kevin Brant
Ms. Marty Carey
Mr. Kurt A. Carlson
Mr. Mike Stoveken
Mr. Richard J. Willis, Jr.
Patricia S. Wilson
Loris and Gary Sherman
Jerry Wojciechowski
Mr. and Mrs. Paul Andersen
Mrs. Kellie Andersen
Ms. Kathleen M. Branigan
Ms. Kathy Carr
Mrs. Dianna Contino
Ms. Diane Davis
Mrs. Colette M. Eaglehouse
Joanne and Lynn Eichhorst
Mrs. Trudy A. Foster
Ms. Regina Friedrich
Mr. and Mrs. Brian F. Garland
Jim and Karen Havlena
Christina and Christopher Hawtrey
Mr. Gerald Hegger
Hill House Products
Mrs. Asako U. Igawa 
Mrs. Patricia Jabuka
Mr. and Mrs. Jerel K. Jackson
Mr. and Mrs. William L. Peirce
Mr. and Mrs. Sheldon T. Kawahara
Mr. Daniel Kelley 
Ms. Linda Kimble
Ms. Karla Kriz
Mrs. Jill M. Lee
Mr. and Mrs. Philip E. Lewis
Michael and Bonnie McGoon 
Ms. Sandra Minich
Mr. Richard Moyer
Ms. Martha L. Mulkiewicz
Mr. Robert Munson
Mr. and Mrs. Richard C. Pepin
Mrs. Amala Peruman
Mrs. Gail J. Rucker
Ms. Susan L. Salay
Mr. Gerardo R. Santos
Mr. and Mrs. Edward V. Shipley, Jr.
Ms. Kathryn A. Skjei
Mrs. Alice L. Smith
Mr. John Stonebarger
Tomkinson & Associates, Inc.
Mrs. Carrie D. Toso
Michael Wojciechowski
Ms. Kathy Carr
Mrs. Dianna Contino
Ms. Diane Davis
Mr. Gerald Hegger
Hill House Products
Ms. Linda Kimble
Ms. Karla Kriz
Mrs. Jill M. Lee
Ms. Sandra Minich
Mr. Richard Moyer
Mr. Robert Munson
Mrs. Amala Peruman
Mrs. Gail J. Rucker
Ms. Susan L. Salay
Mrs. Alice L. Smith
PATHLIGHT SUMMER 2011 Tomkinson & Associates, Inc.
Mrs. Carrie D. Toso
MatThew Wojciechowski
Ms. Kathy Carr
Mrs. Dianna Contino
Ms. Diane Davis
Mr. Gerald Hegger
Hill House Products
Ms. Linda Kimble
Ms. Karla Kriz
Mrs. Jill M. Lee
Ms. Sandra Minich
Mr. Richard Moyer
Mr. Robert Munson
Mrs. Amala Peruman
Mrs. Gail J. Rucker
Ms. Susan L. Salay
Mrs. Alice L. Smith
Tomkinson & Associates, Inc.
Mrs. Carrie D. Toso
Sharren Yamron
Ms. Carolyn C. Batz
Mr. Michael K. Feeney
Ms. Kathryn Harrison
Mr. Nat Hunter
Ms. Laurene Kane
Ms. Marla Presley
Mr. David Robertson
Mr. Gary T. Yamron
Mr. Sam Yamron
Mr. Lawrence Yamron
Bernadine Young
Ms. Antoinette V. Andolfatto
Mr. and Mrs. John Brunnabend
Mrs. Sharon Clark-Napolitano
Mr. and Mrs. Joe Colony
Mr. Adam C. Crahall
Ms. Kathleen M. Donaghy
Mrs. Karen J. Gehrett
Ms. Dorothy Howe
Mrs. Jean Knorr
Ms. Patricia McHugh
Mrs. Bonnie Mitchell
Mrs. Marilyn Peterson
Mrs. Carol Pinola
William and Kathleen Scheufele
Whitetal Ski Patrol
Mrs. Jean P. Young
Mrs. Mary Lou Light
Mr. and Mrs. Don Mielke
Mr. and Mrs. Charles Sadler
Mrs. Brenda Thomason
Jerry and Janet Vandeberghe
Lynda O. Sawyers-Willis
Mrs. Kim Adams
Mr. Dominic Agyepong
Mrs. Hilarie Boone
Mrs. Beverly Clevenger
Mrs. Tina DeHaven
Mr. and Mrs. James Dennis
Ms. Malinda Kroskie
Mr. Peter W. O’Hara
Mr. Larry L. Willis
Mr. and Mrs. Robert F. Zydelis
Tiffany A. Scalone
Andrew and Stella Aspromonte
Pam and Jimi Colon
Roy K. Schardin
Ms. Helen L. Schardin
Mary B. Schumacher
Barbara L. Scott
Ms. Wilma L. Scott
Kimberly A. Scott
Ms. Diane P. Alleman-Stevens
Ms. Linda Baker
Community Bank of Santa Maria
Mrs. Carol Cossa
Dennis Bethel & Associates, Inc.
Ms. Julie DeSantis
Diani Ward Diani, LLC
Ms. Sandra M. Dunne
Ms. Anne Gagne
Mr. and Mrs. Herbert Gerfen
Ms. Sherrie Goodrich
Mr. Dustan Johnson
Mr. Jerry Meyer
Bill and Judy Moffatt
E. W. Olson and J.R. Lynch
Santa Maria Valley Chamber of
Commerce
Mr. Steven C. Scott
Mr. Robert W. W. Scott
Ms. Valerie Tesauro
Trojan Petroleum, Inc.
Mr. Jerry Williams
Kim Scott
Zorina Schultz, RN, MSN, CCRN
Ramona Searcy
Ms. Carol Jeanette Volkmann
Karolyn Sebastian
Mrs. Patricia J. Sebastian
Keith Sebastian
John Sebastian
Ken Sebastian
Kathy Sebastian
Kelly Seibert
Minerals Technologies
Ronald and Mary Lou Zach
Daniel M. Sheridan
Ms. Jean D. Pitcher
Ms. Jean Sheridan 
Herb Shernoff
Camm and Sue Epstein 
Marcine Smith
The Honorable Jeannie DiMauro
47
I n h o n o r o f
DONATIONS: IN HONOR OF
DONATIONS LISTED WERE RECEIVED Between March 1, 2011, and MAY 31, 2011.
48
Mr. Charles J. McGowan
Stacey Gausling
Dr. and Mrs. Mark Moran
Mary E. Gillam
Mrs. Debra Hoffman
Geal A. Goldbeck
Mr. and Mrs. Dean W. Goldbeck
Roberta Granai
Mr. and Mrs. Rino Aldrighetti
Ms. Emma Bonanomi
Ms. Amanda Butts
Ms. Debbie Castro
Ms. Micaela Cohen
Ms. Adrienne H. Dern
Ms. Christine Dickler
Ms. Denise Granai
Ms. Carsten Hailey
Ms. Patty Hunt
Ms. Megan Mallory
Mrs. Jillian McCabe
Ms. Nancy Riedl
Donna M. Rogers, RN
Ms. Kim Serraro
Mrs. Rebecca L. Shermann
Mrs. Anita Smith
Ryan Grann
Daren and Kerry Grann 
Tim and Deb Shelton 
Emma Gray-Gonfalone
Ms. Martha C. Akers
Mrs. Jacqueline Bryan Bunn
Mrs. Edwina C. Hardin
Ms. Kerry Mulvihill
Dr. Peter C. Ray
Mrs. C. Ruth Shearer
Dr. George Unis
Savanha Groebner
Mrs. Anne B. Condon
Mrs. Deborah A. Donley
Ms. Theresa A. Hurley
Mr. and Mrs. Stephen A. Jones
Ms. Angela d’Ambrosio Montgomery
Ms. Brianna Mungo
Mrs. Kathy L. Simeone
Mrs. Susan Sovik
Mrs. Jeanine Wakefield
Arthur L. Gross
Dr. and Mrs. Clifford A. Gross
Emma Harrington
Ms. Frances Handley
George E. Harris
Ms. Shirley J. Olson
Frank M. Hetrick
Mrs. Norma J. Hetrick
Ursula J. Hummel
Mr. and Mrs. James D. Corsnitz
Terrence Jen
Ms. Lilian H. Leung 
Anna Jeter
TCF Foundation
Harry and Shirley Winters
Pat A. Kaiser
Mr. Michael Mueller
Shea E. Kelly
Mrs. Marilyn F. Kelly
Sophie Klein
Strategic Edge Communications
Roxanne L. Koerber
Ms. Pamela R. McKay
Frank Koppelman
Mr. Howard Rosenberg
Madeline Kosky
Mrs. Marsha Schwab
Melanie J. Kozak
Mrs. Amanda M. DaSilva 
Drew D. Krajeck
Ms. Mary A. Grabowsky 
Jason and Mariska Krajeck 
Emily Lanzola
Ms. Margaret A. Amberik
Lakewood Catholic Academy
Margaret and David Lanzola
Ms. Christine E. Masulovich
Mrs. Lindsey M. Shelley
Ms. Kimberly J. Smith
Ms. Patricia A. Sullivan
Sean Lehosky
Mrs. Bernadette S. Semenick
Kim Leslie
Ms. Cheryl Leslie
Michele Lisee
Mr. Edward W. Lapensee
Janet Lopez
Penneco Oil Company
Carol Lore
Ms. Nellie G. Morgan
Annette S. Markin
Mrs. Deborah Cox
Mr. Jason D. Eastman
Maria Martuccio
Mrs. Katy Acerra
Mrs. Melissa Alvarez
Mrs. Rachel Basista
Ms. April Bevilacqua
Mrs. Patricia Brenneman
Mrs. Christina M. Brown
Ms. Nicole Curd
Mrs. Tonia M. Epple
Mrs. Miranda Ezzo
Mrs. Jennifer Gassman
Mrs. Jami Gilronan
Mrs. Veronica Henderson
Ms. Christina Kaip
Ms. Amy Knight
Ms. Melissa Lasher
Mrs. Carmellina Leo
Ms. Wendy Long
Ms. Courtney Lymber
Ms. Maria Martuccio
Ms. Joette Martuccio
Ms. Lucia Martuccio 
Mrs. Wendy Martuccio
Mr. John Martuccio
Ms. Caroline Martuccio
Mrs. Erin C. Meyer
Mrs. Lori Mikulka
Mrs. Lynn Pomponio
Miss Sharla Ranttila
Dr. Nicole Ranttila
Ms. Melissa Schmitt
Mr. David W. Schuller
Mrs. Sharon Simmons
Mrs. Lisa M. Stephenson
Mrs. Jennie Weiss
Mark Matonti
Gordon and Ann Marie Knight and
family
Suffolk Heart Group Employees
Rachel Abraham
Mr. Eric C. Appelbaum
Mr. Joseph Cattano
Mr. and Mrs. Howard Greenberg
Ms. Liv Grey
Ms. Linda Hong
Marla Akins
Dr. and Mrs. Richard Olitsky, DDS
Robert Angiollilo
Ms. Mziya Weber
Cindy Baker
Mr. John Kirchgessner
Stuart M. Berwick
Ms. Kathleen Berwick
Denise Bradby
Mrs. Emily M. Bradby
Emily Broadhurst
Karen and Arthur Broadhurst 
Mr. Kevin Kondry 
Riley L. Buchanan
Mr. and Mrs. Thomas Myers 
Jaclyn Burdick
Ms. Cherie T. Garling
Shyla Burditt
Mr. Frederic Burditt
Gladys L. Burns
Mrs. Gladys L. Burns
Brenda Carter
Penneco Oil Company
Debbie Castro
Strategic Edge Communications
Veronica Colsher
Ms. Maryann E. Hughes
Matthew T. Courtney
Mr. Craig Courtney
Catherine Doak
Ms. Amanda Gurr
Sarah Donoughue
Mr. and Mrs. Timothy M.
Donoughue 
Raed A. Dweik
Ms. Melissa Mitchell
Sylvia Earley
Ms. Michelle Claps
Sam Epstein
Shirley and Norman Epstein
Liam Epstein
Danielle Epstein
Mr. David Tolchin and Ms. Shira
E. Epstein 
Shirley Epstein
Mr. and Mrs. Isaac Taubenfeld
Kimberly Farmer
Barbara Fields
Paula and E.L. Donovitz
Philanthropic Fund
Leo Fields
Paula and E.L. Donovitz
Philanthropic Fund
Priscilla C. Franz
Ms. Karen Franz 
Caroline R. Friedman
Mr. Eric P. Friedman 
Mr. Robert Glass
Ms. Grace Ianno
Robert McCully
Mr. and Mrs. John A. Awood 
Rena L. McDonald
Lisa and Tom Harris
Sandy McEwen
Dwight Moody
Mr. Elrid M. Moody
Gordon R. Morris
Leslie and Robert Hudson
Ray and Norma Morris
Amy L. Mullican
My Patients in Santa Barbara
County
Jeffrey S. Sager, MD 
Derrik D. Neal
Cleal and Dexter Neal 
Kimberly Nunes
Mrs. Cheryl A. Long
Betty B. O’Byrne
Mr. Daniel J. O’Byrne
Rita Orth
Judy and Don Anderson
Rodolfo M. Pascual
Mrs. Connie Cocks
Patricia R. Paton
Ms. Michelle Claps
The PH Family on Facebook
Mr. Stuart M. Berwick
Amy Piazza
Mrs. Debra A. Baker
Ms. Angela E. Beard
Ms. Tabitha Oravetz
Mrs. Jill Piazza
Mrs. Amy Piazza
Posh Little Closet LLC
Ms. Robin Sarcinello
Mrs. Rita Smolik
Miss Leah C. Stamp
Cynthia Pickles
Mr. Timothy C. Pickles 
Puerto Rico PH Patients
Mrs. Carmen G. Lozada-Bruno 
Arthur Raney
Mr. Darin E. Raney 
Merle Reeseman
Roger and Deborah Towle
Stuart Rich
Mrs. Maribeth Evens
James D. Rider
Ms. Connie Fitzgerald
Ms. Jeannie Kendrick
Mrs. Lil Long
Ivan M. Robbins
Jonette L. Robinson
Ms. L. Cheryl Hargraves
David A. Rocco
Mr. Bob Meinert
Olivia Rodrigues
Mrs. Bernadette Alberta
Mrs. Gina Alberta
Mrs. Aimee Alonso
Ms. Roberta W. Arden
Mrs. Erin Baker
Ms. Lori Bennett
Mrs. Maria Blender
Ms. Susanne Martinez
Mr. John Migueis
Mrs. Christine Morey
Ms. Kathleen Mulkeen-Jezioro
Myhope Therapy Services, LLC
Ms. Karen Myer
Mrs. Melissa O’Brien
Ms. Kim Padlo
Mrs. Pat Palmieri
Ms. Chris Palumbo
Ms. Maria Penafiel
Mr. Pedro Pereira
Mrs. Telma Pereira
Mr. Anatolij Petrov
Mrs. Lora Pollak
Ms. Jenny Rapoport
Miss Rebecca Rapoport
Mrs. Ilana Rivera
Ms. Christina Rodrigues
Ms. Lily Rodrigues
Mrs. Kristin Rogers
Mrs. Lori Rosania
Mrs. Dana Ruziecki
Ms. Tara Ryan
Ms. Marsha Sacks
Mr. Daniel Santos
Miss Colleen M. Schnell
Mr. Dominic Sequeira
Ms. Kely Sequeira
Mr. Tom Sequeira
Ms. Sarah Siroka
Mrs. Liberty Smith
Mrs. Tara M. Smyth
Mrs. Subha Srinivasan
Dr. Janette Steets
Ms. Annie Stollmeyer
Mrs. Stephanie Strzykalski
Mr. Dominick Tammaro
Unum
Ms. Jacqueline R. Urbanski
Mrs. Barbara Valentino
Ms. Alejandra Villada
Ms. Michelle Weckesser
Mrs. Rosemary Whelan
Hy Rubin
Arlene and Bernard Greenstein
Jeffrey S. Sager
Mr. William J. Wetter
Helen L. Schardin
Ms. Barbara S. Dawson
Colleen M. Schnell
Ms. Deidre M. Evans
Twana Schulz
Mrs. Doris Thomas
Maddy Shannahan
Mrs. Pam Godwin
Carol A. Skeens
Dolores and Charles Curtis
Sheila Smith
Ms. Dawn Jones
John R. Sperando
Joanne and Kenneth Schmidt 
Cesarina and Vincent Zito
Joanne Sperando-Schmidt
Mr. Connor McHugh
Cesarina and Vincent Zito
Emily Stibbs
Mr. Bill Cole
Mr. and Mrs. Mark L. Ellingson
Patrick and Colleen Hosford
Mr. John S. Ippolito, Jr.
Mr. and Mrs. Steve Winnon
Karla Stutsman
Mr. and Mrs. H. R. Gentsch
Jeanne R. Tarsches
Mr. Dan Goldstein
Michael and Suzanne Holmes
Kellie E. Tasto
Mary and Gordie Dirlam
Mr. and Mrs. Joe Gilbertson 
Susan V. Temple
Mr. Charles A. Vass
Stephanie M. Terrell
Mr. Paul Terrell
Lauren Thompson
Ms. Carol J. Condie
Susan K. Tointon
Mr. and Mrs. John A. Awood 
Daniel Torres
Mr. and Mrs. Jose A. Narvaez
Sherrie L. Turkheimer
Paul Turkheimer
Ally Turkheimer
Sherrie and Allan Turkheimer
Harriet Turkheimer
Sherrie and Allan Turkheimer
Stella Violet
Ms. Dawn Butler 
Ms. Dianne K. Lancaster 
Christina Waldman
Mr. and Mrs. Richard Pralat
Stephen L. White
Ms. Joy W. Saville
David Williams
Mr. Tim Adkinson
Mr. and Mrs. Randy L. Badger
George and Helen Barrow
Mr. Brian Benson
Bishop Greco Columbiettes
Mr. Chad M. Brewer
Ms. Dana Bridges Kanfoush
Mrs. Barbara D. Hockaday
Mr. Curtis Howe
Kensington Financial Group Inc.
Knights Of Columbus #9499
Mr. Mark Leitner
Mr. Steven W. Leitner
Mr. John Charles Lloyd
Mr. Steve Lundgren
Marzano Asset Management, LLC
Mr. Brad Mason
Mr. Mitchell E. Miller
Mr. John H. Myracle
William J. Oneill, DPM
Mr. Timothy C. Pickles 
Mr. Bradley R. Romine
Mrs. Gayle Smith
Ms. Lisa R. Smith
Stokesdale Electric Co. Inc.
Strong & Associates, PC
Mrs. Anne Sullivan-Parra
W & W and Sons Contractors Inc.
Mr. William Weldon
Mr. Mark A. Williams
Gail Willner-Giwerc
Ms. Susan Bargemann
Wayne Wilson
Mr. and Mrs. Brad M. Wilson
Deborah G. Wilson
Mr. and Mrs. Jim P. Wilson 
Betty Lou Wojciechowski
Michael Wright
Mrs. Mary Ann Kohring
Lindsay Wubben
Daniel and Betty Wubben
Joshua Wubben
Daniel and Betty Wubben
The Yale PH Center
Terence K. Trow, MD
Asra Zaheeruddin
Maya and David Raab
Elise M. Zwicky
Ms. Rita DeSollar
GENERAL DONATIONS
Ms. Cynthia Brogan
Ms. Carmen Centeno
Choice Signs
Ms. Christie Choma
Ms. Lizete Costa
Ms. Jillian Cote
Ms. Jen Cueva
Mr. Manuel Da Silva
Mrs. Silvia Da Silva
Ms. Elizabeth B. Davis
Ms. Esther del Carpio
Ms. Laurie DePalma
Ms. Maria DeVita-Krug
Ms. Sarah Dinicola
Ms. Jhisella Domingo
Mrs. Mary Ellen Doyle
Mrs. Stephanie Dreyer
Ms. Erica Drozd
Mrs. Peggy Ensslin
Mr. Gideon Freud
Mrs. Jo Freud
Mr. Arnie Garber
Mrs. Rita Golden
Ms. Nicole Gorsky
Ms. Doren S. Greene
Ms. Maureen Groglio
Brian Hanna, MD, PhD
Miss Lynn Harbuzinski
Mr. Paul Hooker
Ms. Margo Hooker
Dr. Andrew Howard
Mrs. Betty Janowski
Ms. Daniela Jara
Mrs. Donna Jensen
Ms. Shannon Johnston
Mr. Christopher Jordan
Ms. Kathleen Kobe
Ms. Johanna Kornberger
Ms. Laurie Kovolisky
Ms. Jessica Kowalski
Mr. Steven Kowalski
Ms. Rebecca Kowalski
Mrs. Nancy Kowalski
Mrs. Melanie J. Kozak
Mr. Jason Kozak
Ms. Christina Lapatka
Ms. Christina Liebrich
Mrs. Heather Lisbona
Ms. Samantha Losinski
Mrs. Amy Lovato
Mr. Perry Mamigonian
Mrs. Deborah Marcus
general donations
DONATIONS LISTED WERE RECEIVED Between March 1, 2011, and May 31, 2011.
A&D Floors Inc.
Mrs. Ruth Aberasturi
Mrs. Linda Abou Sabh
Accredo Therapeutics Inc.
Ms. Wanda Ackerman
Actelion Pharmaceuticals US, Inc.
Active Enterprise
Mrs. Danielle Aguirre
Gregory S. Ahearn, MD
Mrs. Mary Ahern
Javer Ahmad, MD
Ms. Helen E. Albright
Alescis of Shoregate
Mr. Larry Alexander
Ms. Adrienne Alguadich
Ms. Brenda Allen
Mr. Andrew A. Marino and Mrs. Megan
T. Allen
Mrs. Betty O. Allison
Mrs. Carla Allison
Ms. Diane K. Alsdorf
Mr. Thomas Alvarado
Ms. Susanna M. Alvarez
American Girl
Mr. and Mrs. Gordon Amhaus
Mrs. Anita Amira
Ms. Anita Ancic, PA-C
Ms. Irene Anderson
Mr. Robert Angiollilo
Mrs. Lesa Anthony
Francisco J. Aponte, RN
Applied Materials HQ Group
Dr. Paulina Z. Arancibia
Mrs. Christine Archer-Chicko
Albert and Manuelita Arieta
Mrs. Gentle Arnez, RN, BSN
Mr. and Mrs. John B. Arnold
Mr. Steven Arnold
Mrs. Suzi D. Askew
Ms. Teresa Asselin Hayes
Thomas Assiff, PhD, and Marilyn Assiff
The Atherton Family
Mrs. Patricia J. Atkinson
Attractions Dining and Value Guide
Ms. Phyllis A. Atwood
PATHLIGHT SUMMER 2011 Mr. Ron Austin
Mr. Don R. Babick
Baci Italian Restaurant Anaheim
Ms. Kathy Badger
Mrs. Pamela K. Bagwell
Michael and Cathie Baker 
Mrs. Claudia Baker
Mr. and Mrs. Harry Bakker
Sahil Bakshi, MD
Ms. Angela K. Baldwin
Mrs. Mary Beth Ball
Mr. David L. Balser
Paul and Judi Bankit
Mr. and Mrs. Walter Bankston
49
G E N E R A L D onations
Mr. and Mrs. Mark Banny
Mrs. Andrea Banworth
Ms. Barbara Barkin
Col. and Mrs. Benjamin H.
Barnard 
Ms. Tammie Barnard
Christopher Barnett, MD
Mr. Craig Barnett
Mr. and Mrs. Louis Baron
Kevin and Amy Barr
Mr. and Mrs. Evan T. Barrington
Mrs. Kristy Barron
George and Helen Barrow
Ms. Lori Barth
Mr. Dennis W. Bartoskewitz
Mr. Douglas R. Bassil, Sr.
Ms. Marcella M. Bateman
Mrs. Sha Batt
Seymour and Gloria Baum
Bayer Healthcare Pharmaceuticals
Inc.
Ms. Nunnie S. Bea
Mrs. Angela Beadle
Mr. Brett Beaty
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52
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State Farm
Mr. Dennis Stavropoulos
Ms. Susannah Kirkham Steffy
Donna and Paul Stegman
Ms. Staci Stephens
Ms. Marian Stevens
Mrs. Patricia Stewart
Stibbs & Co., PC
Ms. Eileen C. Stilson
Robert Stinogel
Ms. Lynn L. Stokke
Mrs. Janet Stone
Ms. Libby Stone
Stone Mountain Golf Club
Ms. Virginia M. Storms
Mrs. Nellie D. Story
Ms. Ana Maria Strauss
Mrs. Joan Strine
Mr. and Mrs. Phil L. Strom
Mr. Donald E. Struble
Mr. James D. Stuart
Mrs. Daphne L. Stubbs
Ms. Jennifer Stubbs
Mrs. Marjorie D. Sullivan
Mr. Steve Surfaro
Ms. Rebecca R. Sutter
Mrs. Rebecca L. Sutton
Ms. Lindsay Swackhamer
Mrs. Dolores Swanson
Mrs. Paula Swanson
SWBC Mortgage Corp
Mr. Tyrone L. Swead
Miss Joanna Sweat
Ms. Karyn Sweeney
E. M. Swinderman
Ms. Mary L. Swinney
Mrs. Jeane M. Szwarc
Mrs. Mary E. Szymanski
T.G.I. Friday’s
Ms. Shirley Tabor
Tanglewood Park
Dr. Peter A. Pinto and Dr. Elizabeth
L. Tanzi
Mr. Todd Tartavoulle
Paul and Kellie Tasto
Ms. Arlene S. Tate
Ms. Carol Taylor
Ms. Carolyn Taylor
Ms. Deborah Taylor
Mr. Douglas R. Taylor
Mrs. Joan F. Taylor
Mr. Larry Taylor
TCF Foundation
Ms. Barbara E. Tecklin 
Ms. Brenda Templeton
Mrs. Joan Tennyson
Mrs. Grace A. Terry 
Ms. Rachel S. Terry
Mrs. Susan S. Terry
Texaco Xpress Lube
The Arena Energy Foundation
The Brick Oven
The Chamber Of Commerce
The Children’s Hospital Association
The Cleveland Improv Comedy Club
The Cleveland Pine House
The Kimball Group LLC
The Sherwin Williams Company
The Siena School
The Woodlands Dev. Co.
Mrs. Patricia C. Thill
Mrs. Barbara Thomas
Ms. Brigette Thompson
Mrs. Sally Thompson
Warren and Ellen Thompson
Ms. Michele Thrash
Karington L. Tibbets
Mrs. Lawana R. Timberlake
Ms. Anna Timchalk
Mrs. Jean A. Tingwald
Donald and Rachel Tira
Ms. Jeannie Tom
Angela Tooley
Fernando Torres, MD
Toste Grading And Paving
Roger and Deborah Towle
Robert and Amanda Trapp
Mr. Theodore Traptow
Dr. Linda Trautman 
Mrs. Linda H. Travis
Denis and Gail Tremblay
Mr. Frank L. Trevino
Dennis and Florine Tripp
Mrs. Judith Trost
Mrs. Nancy J. Trost
Mr. and Mrs. Rodney Trueblood
Mr. Victor Truglio
TSP
Mrs. Fredreckia Tucker
Mr. Gerald Turner
Ms. Merrisa Turner
Mr. Nat S. Turner
Mrs. Elaine L. Tweedy
Tweetsie Railroad
Mrs. Joanne K. Utley
Mr. David Utzinger
Ms. Holly K. Utzinger
Ms. Maria Valazzi 
Ms. Mica Van Fossen
Ms. Bertha N. Van Pelt
Mr. and Mrs. Steve Van Wormer
Ms. Lorun C. Vanskiver
Ms. Michelle VanWinkle
Mr. Vicente Velez
Mr. and Mrs. Terrance J. Ven Rooy
Vera Moulton Wall Center for
Pulmonary Vascular Disease
Mr. Frank J. Verret, Jr.
Mr. Daniel A. Vertrees
Mrs. Diane Vezza
Ms. Lori M. Villaloboz
Mrs. Kristy Villarreal
Ms. Christine Vintges
Ms. Nicole Vitaioli
Ms. Jaroslava Vochyanova
Mr. and Mrs. Joseph Volino
Mr. Michael L. Vretenar
Ms. Judith M. Vucci
Mrs. Sheila Wade
Mrs. Beth Walker
Mrs. Betty Walker
Gennyne A. Walker, PhD
Ms. Suzanne Walker
Mr. and Mrs. Fred Wallace
Mr. Robert Wallis
Ms. Cindy C. Wangerud
Ms. Dona L. Warner 
Ms. Paula Warren
Mrs. Joyce G. Washington
Ms. Princella Washington
Mr. John R. Waters, Sr.
Ms. Shelley Waters
Mr. and Ms. Dale L. Watkins
Ms. Elaine Watson
Ms. Sibylle M. Waugh
Ms. Stacey Weatherford
PATHLIGHT SUMMER 2011 Mr. Jim Weese
Mrs. Joyce H. Weinmann
Ms. Vivian Weiss
Miss Lorna Welborn
Ms. Katherine L. Wellington
Ms. Linda Wells
Mr. Robert B. Wells
Mr. and Mrs. Patrick H. Weston
Mr. Dave Wheeler
Mrs. Janet K. White
Jim White and April Leuhmann 
Dr. and Mrs. Stephen L. White, PhD
Dr. Susan White
Mr. John E. Whitman
Mrs. Kristen Wieneke
Ms. Rose Wiernick
Mrs. Joellyn Wigton
Mr. and Ms. Donald F. Wild
Mr. and Mrs. David S. Wilhelm
Mr. Layne Wilkerson
Mr. Thomas M. Wilkins
Richard and Wendy Wilkins
Ms. Aretha M. Williams
Ms. Carolyn M. Williams
Ms. Charlotte E. Williams
Ms. Cherie Williams
Ms. Debra E. Williams
Mrs. Elina Williams
Ms. Florence I. Williamson
Mrs. Sharon L. Williamson
Mr. Ray G. Wilson
Mrs. Trudy L. Wilson
Mrs. Cheryl L. Windisch
Mrs. Georgia Winkler 
Ms. Judith Winkowski
Mrs. Mary Winn
Ms. Patricia S. Wise
Mr. and Mrs. Daniel Wissman
Ms. Karen S. Wolf
Mr. Scott C. Wolford
Mrs. Lynne F. Womer
Ms. Jennifer J. Wood
Mrs. Linda A. Wood
Mrs. Sarah Wood
Woodforest National Bank
Ms. Marilyn M. Woodruff
Mr. and Mrs. Kenneth G. Woods
Mrs. Judy Wooldridge
Ms. Joan J. Wrenn
Elizabeth and Gary Wright
Ms. Holly A. Wright
Mr. and Mrs. James Wright
Mrs. Karen M. Wright
Wright Business Technologies, Inc.
Mr. and Mrs. Frank Wrigley
Ms. Dawn Wyrybkowski
Mr. and Mrs. Bernard Yamakaitis 
Mrs. Barbara L. Yamasaki
Dr. Michael E. Yeager
Mrs. Lily Yih
Yorba Linda Womans CLub
Ms. Kasandra L. York
Mrs. Valerie W. York
Mrs. Doris O. Young
Mrs. Jayne Young
Mr. Roger L. Young
Ms. May Yu
Mrs. Gwen L. Zamberlan
Dr. Michael Zastrow
Ms. Sheila M. Zea
Mrs. Lynn Zenor
Ms. Damara Zepeda 
Mrs. Patricia Zerman
Ms. Janett Zermani-Weber
GENERAL DONATIONS
Ms. Cristina Sanchez
Ms. Irene Sanchez
Mr. Ricardo Sanchez
Mrs. Joanne Sanders
Ms. Nancy Sanders
Mrs. Catherine M. Sandon
Mrs. Sandra Sansevere
Mrs. Caroline Santana
Richard and Matacha Saul
Mrs. Roxanne Saverino
Ms. Claire K. Schafer
Ms. Bonny Schellenbaum
Ms. Melinda Schissel
Mr. Larry Schmidt
Mr. Karl Schneider
Ms. Isabelle Schoenfeld
Ms. Blanche C. Schoffman
Mrs. Rosalyn Schreiber
Mr. David P. Schroeder
Ms. Jeanne I. Schroeder
Mrs. Leona Schultz
Ms. Pam Schulz
John R. Schuster, DDS
Schwartz, Page & Harding, LLP
Mrs. Donna K. Schwarz
Mr. and Mrs. Raymond Sciacca
Mrs. Cindy Scialabba
Ms. Frances Scoglio
Mr. and Mrs. Eugene Scott 
Ms. Wilma L. Scott
Ms. Maryann Seaman
Mrs. Beverly Seet
Mrs. Kenna M. Seiler
Mr. Arun Sekhri
Mrs. Joyce Serafini
Mr. and Mrs. Eugene Seubert
Ms. Marcie Sharpe
Robert and Elsie Shartle
Mr. John Shea
Mrs. Phillipa A. Sheard
Ms. Carolyn D. Sheehy
Deb and Tim Shelton 
Mr. and Mrs. Richard Shepsko
Ms. Therese E. Sheridan
Ms. Bethany Shrewsberry
Mrs. Rose M. Shultz
Mr. Richard Siever
Mrs. Netty W. Silber
Ms. Christine L. Silks
Ms. Jill Silman
Silpada Jewelry
Silverleaf Resorts, Inc.
Mr. and Mrs. Jerry C. Simmons 
Mr. and Mrs. Harry D. Simmons
Mr. and Mrs. Edwin L. Simpson
Pat Sinnott
Mr. and Mrs. Thomas J. Sintes
Mr. Alan Slater
Ms. Patricia Slattery
Mr. Robert Slead
Ms. Norma Small
Ms. Alice Smethurst
Mr. and Mrs. Ted Smith
Ms. Carley Smith
Ms. Clara Smith
Ms. Dawn A. Smith
Mr. and Mrs. Jerry Smith
Mrs. Jessica L. Smith
Ms. Juana C. Smith
Mrs. Lisa M. Smith
Ms. Mary Ann Smith
Col and Mrs. Billy F. Smith
Mrs. Sheila Smith
Mr. William Smith, Jr.
Mr. and Mrs. Frederick A. Sneider
Ms. Shirley Snover
Mrs. Leta Snyder
Ms. Vicki L. Snyder
Sociedade Portuguesa Rainha
Ms. Meghan Soell
53
Legacy
of
Hope
Society
PHa’s legacy of hope society
To honor those who have included PHA in their estate plans or
whose legacies have been realized, PHA created the Legacy of Hope
Society. PHA is pleased to recognize the following members.
Sandra Alt Awood
Sally Maddox
Dauna Leigh Bauer*
Bonnie and Michael McGoon
Sylvia Marie Becherer*
Joseph W. Mihuc*
Gloria G. Blodgett*
Karen Moody
Dorothy E. Bradley
Marjorie D. Mott*
Roberta F. Browning* and
Joyce L. Mowrer*
Lee Broadbent
Dorothy and Harry Olson
Rita and Bruce Brundage
Rita and Guy Orth
Jane P.* and Harold P.
Pat and Jerry Paton
Cooper
Carol Posner and Marc Priore
James F. Corbett*
Frances A. Price
Laura Hoyt D’Anna, DrPH
Louise and Gene Salvucci
Charles W. DeVier, III*
Judy and Ed Simpson
Linda M. Feibel*
Marcia and Jack Stibbs
Barbara Gamer
Helena Strauch*
Tammy* and Dean Hazen
Frank A. Tobac*
Mary and Carl Hicks
Torres-Gonzalez Family
Jacquelyn Holt
Deborah and Roger Towle
Richard L. Horrocks
Carol B. Ungar
Terri L. Kopp*
Daniel R. Walsh*
Gloria Lang*
Andrea and Stephen White
Thomas and Mary Jo Linnen
A r e W e M i s s i n g Y o u ?
Please update my mailing list information as follows:
(Please print.)
q Mr. q Mrs. q Ms q Dr. q Miss
Name: ___________________________________________
Business (if any): __________________________________
Address: __________________________________________
City: _ ____________________________________________
State: __________________ Zip: _ ____________________
q
Please check here if this is an address change.
Phone: ___________________________________________
Fax: ______________________________________________
Email: ____________________________________________
I am a:
q
q
Caregiver
q
Parent of a child with PH
Medical professional (title and affiliation): _______________________________________________ Mail or fax completed form to:
Pulmonary Hypertension Association
801 Roeder Road, Ste. 1000
Silver Spring, MD 20910
Fax: 301-565-3994
*deceased members
For more information on PHA’s legacy planning program,
call Jillian at 301-565-3004 x767, email Giving@
PHAssociation.org or visit www.PHAssociation.org/Give
q
Patient
You may also submit a change of address online at
www.PHAssociation.org/ContactUs
P H A S t a f f
Rino Aldrighetti
President
[email protected]
Adrienne Dern
Senior Vice President
[email protected]
Candice Abate
Vice President, Medical
Services & Patient Education
[email protected]
Margaret Beardsworth
Insurance Program Manager
[email protected]
Emma Bonanomi
Associate Director, Patient
Outreach and Services
[email protected]
Dorothy Bradley
Office Assistant
Amanda Butts
Director, Office of the
President
[email protected]
Debbie Castro
Director of Volunteer Services
[email protected]
Micaela Cohen
Associate Director of Medical
Services
[email protected]
Tracey Delaney
Office Assistant
[email protected]
54
Christine Dickler
Associate Director, Publications
Design
[email protected]
Sylvia Earley
Communications & Development
Coordinator
[email protected]
Meghan Finney
Patient Education Program Associate
[email protected]
Caitlin Flewellen
Online Education Associate
[email protected]
Suzanne Flood
Marketing & Communications
Manager
[email protected]
Kathryn Frix
Online Community Liaison
[email protected]
Diane Greenhalgh
Director of Web Services
[email protected]
April Grimsley
Administrative Assistant
[email protected]
Carsten Hailey
Meetings Planning Associate
[email protected]
Patty Hunt
Associate Director of Finance & HR
[email protected]
Jennifer Kaminski
Jessica Ritter
Sophie Klein
Patty Scuderi
Arsène Koissy
Meghan Tammaro
Katie Kroner
Keisha Thomas
Doreen Lucadamo
Rachel Wheat
Development Manager
[email protected]
Volunteer Services Associate
[email protected]
Database Manager
[email protected]
Director of Advocacy and Awareness
[email protected]
Director of Meetings & Conference
Planning
[email protected]
Leslie Mahaney
Special Events Associate
[email protected]
Office Operations and IT Manager
[email protected]
Director of Finance
[email protected]
International Services Manager
[email protected]
Associate Director, Database
[email protected]
Allied Health Program Associate
[email protected]
Elisabeth Williams
Grassroots Campaigns Associate
[email protected]
Megan Mallory
Associate Director, Publications,
Pathlight Editor
[email protected]
Jillian McCabe
Associate Director of Development
[email protected]
Jessica McKearin
Associate Director, Special Events
[email protected]
Michal Rachlin
Kerry Bardorf Family Support Program
Associate
[email protected]
Contact PHA
Phone
FAX
Email
Envelope of Hope (Free Packet for New Patients)
Emma Bonanomi
Member Services and Address Changes
Jennifer Kaminski
New Member Packets, Pins, Brochures and Cards Support Groups
Debbie Castro
301-565-3004
301-565-3994
[email protected]
x777, [email protected]
P a t h l i g h t a n d P e r s i s t e n t V o i c e s
Submissions
--------------------
The Fall Issue deadline is July 31, 2011.
Pathlight is your publication.
Tell us about your support
P H A R e s o u r c e s a n d S e r v i c e s
group, recent event, phenomenal PHer or anything else you’d like
Patient-to-Patient Support Line (daytime, please)1-800-748-7274
Children with PH/PPH
Laurie Jeter, [email protected]
952-380-4999
Organization Liaisons
National Institutes of Health:
Heart, Lung, and Blood Institute
Rino Aldrighetti, [email protected]
479-253-0082
American Thoracic Society:
Public Advisory Roundtable
Rino Aldrighetti, [email protected]
301-565-3004
Patient-to-Patient Support Line Coordinator
Pat Paton, [email protected]
772-597-4962
to share. Let us know how you cope with PH, how you live and work
I n s u r a n c e R e s o u r c e s Accredo’s Hotline for Flolan
for Veletri
for Remodulin
for Tracleer
for Ventavis
Caring Voice Coalition
Curascript Helpline
CVS Caremark Helpline (Remodulin, Tracleer and Flolan)
GlaxoSmithKline Patient Assistant Programs
Letairis
NeedyMeds
Partnership for Prescription Assistance
www.pparx.com
Priority Healthcare Remodulin Hotline
Tracleer Access Program
1-866-9FLOLAN
1-866-344-4874
1-888-485-8350
1-877-483-6828
1-877-483-6828
1-888-267-1440
1-866-4PH-TEAM
1-877-242-2738
every day. We’ll accept articles, quotes, photos, tributes, etc. for
consideration in the newsletter. We also accept submissions of
personal PH stories, pictures, poems and quotes for publication in
the next issue of Persistent Voices. If you’re not comfortable writing
your story — or if you just can’t find the time — contact us and we’ll
interview you about it and write it for you. If you are interested in
reporting for Pathlight or conducting interviews with other members
of the community, let us know. Please contact us with your input and
stories! Send submissions, with your phone number, to:
“Newsletter Submission” or
Print Services Department
Pulmonary Hypertension Association
www.gskforyou.com
1-866-664-LEAP
www.needymeds.org
1-888-477-2669
“Newsletter Submission”
[email protected]
Work submitted will be printed as space permits. Please let us know
if you would like anything returned. PHA cannot be held responsible
for any materials lost.
1-877-462-6225
1-866-228-3546
B o a r d o f T r u s t e e s
Laura D’Anna, DrPH, Chair
Vallerie V. McLaughlin, MD, Chair-Elect
Sally Maddox, Secretary
Roger Towle, Treasurer
Carl Hicks, Immediate Past Chair
Trustees-at-Large
Robyn J. Barst, MD
Colleen Brunetti
Linda Carr
Richard Channick, MD, SLC Representative
Louise Durst, RN, PH Professional Network Representative
C. Gregory Elliott, MD
John Hess
Dunbar Ivy, MD
Mark Jeter
Tony Lahnston
Michael D. McGoon, MD
Rita Orth, RN
Cindy Pickles, RN
Diane Ramirez
Harry R. Rozakis
Traci Stewart, RN, PH Professional Network Representative
Jack Stibbs
Steve Van Wormer
Rev. Stephen White, PhD
S c i e n t i f i c L e a d e r s h i p C o u n c i l
P a t h l i g h t & P e r s i s t e n t V o i c e s
Vallerie V. McLaughlin, MD, Chair
Richard Channick, MD, Chair-Elect
Todd Bull, MD
Charles Burger, MD
Murali Chakinala, MD
Serpil Erzurum, MD
Karen A. Fagan, MD
Robert Frantz, MD
Nicholas S. Hill, MD
Marc Humbert, MD
Dunbar Ivy, MD
Zhi-Cheng Jing, MD
Anne M. Keogh, MD
Dinesh Khanna, MD
Michael Mathier, MD
Michael D. McGoon, MD
Ronald Oudiz, MD
Myung Park, MD
Andy Peacock, MD
Tomas Pulido, MD
Erika Berman Rosenzweig, MD Virginia Steen, MD
Duncan Stewart, MD
Darren Taichman, MD
Victor F. Tapson, MD
Jason Yuan, MD
Roham T. Zamanian, MD
Megan Mallory, Editor
Michael D. McGoon, MD, Medical Co-Editor
Karen A. Fagan, MD, Medical Co-Editor
Camille Frede, Youth PHenomenal Youth Editor
Nancy Frede, Parent PHenomenal Youth Editor
Amanda Martin, Volunteer Copyeditor
Edward Freundl, Volunteer Copyeditor
Jodi Palmer, Volunteer Copyeditor
Liaisons
Louise Durst, RN, Chair, PH Professional Network
Harry Rozakis, Patient Liaison
Distinguished Advisors
David B. Badesch, MD
Robyn J. Barst, MD
Bruce H. Brundage, MD
C. Gregory Elliott, MD
P AT H LIG H T ROUNDTABLE
PHA thanks the Pathlight Roundtable volunteers for their
guidance and contributions to this issue of Pathlight.
Shirley Craig, General Review
Robert Tash, Volunteer Services
Raye Bohn, Advocacy and Awareness
Jessica Lazar, P.A., Medical Services
Emeritus
Dorothy Olson
Harry Olson
Jerry Paton
Pat Paton, RN
Edwin Simpson
Judith Simpson, RN, EDS
Ex Officio
Rino Aldrighetti
55
356
YORK, PA
Web www.PHAssociation.org
www.PHAOnlineUniv.org
E-mail [email protected]
Phone
301-565-3004
Patient-to-Patient Support line 1-800-748-7274
(daytime please)
Pathlight
W hat
PHA
is
PHA?
Don’t want to wait three months
for more news from PHA?
Sign up for PHANews, PHA’s
biweekly e-newsletter, and
receive news from the PH
community every other week in
your Inbox!
www.PHAssociation.org/PHANews

PatHligHt - Pulmonary Hypertension Association

Transcription

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