Parents` Involvement Makes a Real Difference

*
Centers marked with an have been selected
to receive funding from the Centers for Disease Control
and Prevention for a specific thalassemia initiative.
Thalassemia Treatment Centers
Children’s Hospital & Research Center at Oakland
Dir: Elliott Vichinsky, MD
Contact: Dru Foote, (510) 428-3342
*
*
Weill College of Cornell University
*
Dir: Patricia Giardina, MD
Contact: Dorothy Kleinert, (212) 746-3404
Children’s Memorial Hospital, Chicago
Life l ine
October 2010
Cooley’s Anemia Foundation
Dir: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618
Leading
Children’s Hospital Los Angeles
*
Dir: Thomas Coates, MD
Contact: Susan Carson, (323) 361-4132
of Philadelphia
* Children’s Hospital
Dir: Alan Cohen, MD
Contact: Marie Martin or
Vanessa Nixon (215) 590-2197
Children’s Medical Center Dallas
Hospital Boston
* Children’s
Dir: Ellis Neufeld, MD
Contact: Jennifer Braunstein, (617) 355-2457
New Patients: Michelle Burnett, (617) 355-8246
Dir: Zora R. Rogers, MD
Contact: Deborah Boger, (214) 456-6102
These Thalassemia Treatment
Centers are equipped to address
the multiple concerns of thalassemia
patients, including annual
comprehensive care evaluations.
They are also happy to work with
your current hematologist to help
coordinate your care.
Texas Children’s Hospital (Houston)
Dir: Brigitta Mueller, MD
Contact: Roz Bryant, (832) 822-4242
Call today to set up your appointment!
Healthcare of Atlanta
* Children’s
Dir: Jeanne Boudreaux MD
Contact: Laurie Thomas, (404) 785-3529
In addition, there are a number of thalassemia treatment
centers which are associated with the centers listed above.
Contact CAF at (800) 522-7222 for a list of these Centers.
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the
Fight
Against
Thalassemia
Parents’ Involvement Makes a Real Difference
guests are of Mediterranean descent and
knew very little about the blood disorder.
Most of them were thalassemia carriers
but didn’t know what that meant for them
or their children.”
“When we first found out Gabriella had
thalassemia, we couldn’t believe something
like this could happen to our daughter.
CAF assured us that we were in good
hands and that they’ll be there for us every
step of the way. And they have been.”
So say Teresa and Joe Turchi, whose
adorable daughter Gabriella recently turned
one year old. The Turchis contacted CAF
shortly after Gabriella was diagnosed
with thalassemia at four months of age.
“Everyone at CAF has been extremely
helpful and encouraging; they have made
us feel like family,” Teresa says.
“We’re so glad to have a great support
system through CAF.”
The Turchis especially appreciate the
amount of valuable information available
from CAF. “As soon as we found out about
our daughter’s condition, we searched
the web,” Teresa says. “But a lot of the
information we found before we discovered
CAF was out of date. When we found that
so many changes had occurred in the last
20 years, we were so relieved. We had
a sense of hope from the knowledge that
with proper treatment, our daughter could
lead a long and healthy life like other girls
her age.”
“We went into this lifelong blood disease
knowing nothing about it and came away
from CAF with a ton of very useful and
encouraging information,” Teresa adds.
“Now we look at thalassemia as part of
our way of life. It’s something we have
to treat and learn more about, but it isn’t
Gabriella Turchi
the end of the world to have a child with
Cooley’s anemia.”
Recognizing how valuable CAF is, the
Turchis immediately took steps to help
provide CAF with the support it needs
to continue helping the thalassemia
community. Teresa and Joe held a
“Cooley’s Anemia Fight for a Cure Beef
& Beer” benefit in April 2010, just four
months after their daughter was initially
diagnosed.
“We wanted to do whatever was possible
to help our little girl,” Teresa says.
“If raising money for research in order
to find a cure is all we can do, we’ll plan
a benefit every year. Many of our family,
friends and even people we didn’t know
came out to support our cause and
everyone had a great time. It was very
touching to see how many people are
willing to help someone in need. We tried
providing as much information as possible
about Cooley’s anemia since most of our
Teresa encourages other family members
to do whatever they can to help support
CAF. “Just try,” she says. “Host a beef
and beer night, have a golf outing, or just
leave jars at local stores asking for
customers to donate to this wonderful
cause. Anything helps and takes us that
much closer to finding a cure. Having
a fundraiser can be a very challenging
endeavor, but we found out that there are
many people and companies willing to help.
And most importantly, you feel like you’ve
done something special to help not only
your child, but other people’s children
as well.”
“Gabriella is the light of our lives,” Teresa
says proudly. “She’s a beautiful, normal,
happy, healthy, growing little girl who always
has a smile on her face. We feel very
blessed to have her. As for CAF, thank you
for being there for us when we needed
you the most. It means a lot to us that there
is someone out there who knows what
we’re going through and cares about our
family. We will continue to be there for the
foundation with our yearly fundraisers.”
Anyone interested in learning what s/he can
do to help CAF in its mission, contact CAF
National Fund Raiser Alyssa Youngerman,
[email protected]
or (212) 279-8090.
DISCLAIMER:The information in this publication is for educational purposes only and is not intended to
substitute for informed medical advice. You should not use this information to diagnose or treat a health
problem or disease without consulting a qualified health care provider. The Cooley's Anemia Foundation
strongly encourages you to consult your health care provider with any questions or concerns you may
have regarding your condition.
Cooley’s Anemia Foundation
1
contents
1
• Parents Help CAF
2
• CAF Letter
Letter from
the President
& National
Executive
Director
of CAF
• OSIA Launches ‘Cure Is In sight’
3
• CAF Shares Patient Nutrition Info
with NIH
• Care Walk
4
5
• Cigar Smoker
• Pregnancy in Thalassemia
Tony Viola
• Patient Profile: Laurice Levine
• Elks Miracle Plunge
Dear Friends,
6
• CAF-Funded Research Advances
Treatment & Search for Cure
7
• Thalassemia Community Energized
by 9th Cooley’s Anemia Symposium
8
• National Blood Disorders Conference
• APP Offers Generic Desferal
9
• Patient Learns & Earns for CAF
• Donate Your Vehicle & Fight
Thalassemia
10 • Studies look at Exjade & Cardiac Iron
11 • Volunteer Spotlight: Robert Aiello
Golf Outing
• On The NYS OSIA Menu:
Total Support for CAF
12 • Parent Conference Call-Ins
• Thalassemia Webinars Are Coming
• NJ Elks Support Fight Against
Thalassemia
Gina Cioffi, Esq.
On page 6, you’ll read that CAF awarded
$329,000 in medical research funding this
year for some important projects.
We could have awarded double that
amount; unfortunately, we had to limit our
funding for medical research because we
simply didn’t raise enough money.
This is a situation that must change.
We have been making tremendous strides
in thalassemia in recent years; our patients
simply cannot afford for us to continue
at our current reduced level of operations
or to cut back even more.
For years, we have worked to find new
sources of funding and while we have
been quite successful, the overwhelming
majority of our funding comes from
individuals like you who understand the
importance of our work and how vital our
success is to everyone with thalassemia.
13 • Summer Lovin’
14 • Chapter Update
15 • CAF Fund Appeal
Without you, there is no CAF.
Without CAF, everyone with thalassemia
suffers – and these kids have enough
challenges facing them already.
16 • Thalassemia Treatment Centers
OSIA Launches
‘Cure Is In Sight’
Campaign
Long-time CAF ally OSIA (Order Sons
of Italy in America), the largest and oldest
national organization for men and women
of Italian heritage in the United States,
is launching “A Cure Is In Sight,” a new
campaign designed to raise awareness
of thalassemia and funds for CAF’s medical
research programs.
OSIA lodges around the country will
contact local supermarkets, banks and other
high-traffic businesses to encourage them
to participate in the campaign. They will
offer “A Cure Is In Sight” emblems to their
customers, who can pay $1.00 to sign
an emblem and stick it to the business’ wall.
“This kind of campaign has been
highly successful for other non-profit
2
Cooley’s Anemia Foundation
With all the advances in gene therapy
as a cure and in better treatments to keep
our kids alive, we cannot afford to slow
down. Now is the time when we need
to increase our efforts – and we can only
do that if you get more involved: through
scheduling a CAF Care Walk on May 1
(see page 3), setting up a personal Fund
Raising page, increasing your donation,
sharing the imporant work we do with your
network and encouraging them to join us
in our efforts, and by so many other ways
that will give us the resources to keep us,
and the entire thalassemia community,
moving forward.
Sincerely,
Anthony J. Viola
CAF National President
Gina Cioffi, Esq.
Communication between
CAF and the thalassemia
CAF Shares Patient
Nutrition Info with NIH
community helps to
ensure that information
like that gathered from
this survey is heard by
agencies and individuals
of patients take vitamin C
regularly, but most do not take with
their chelator, which is optimal.
Among the survey’s findings are:
66.1% of patients take a
multivitamin/mineral supplement.
creating more informed
and effective patient
52.3%
drink tea as part of their self
care routine, but many do not take
during a meal, which is preferable.
This incredible response enabled CAF
National Executive Director Gina Cioffi
to present new data to the Nutrition and
Hemoglobinopathies Working Group
of the National Heart, Lung and Blood
Institute on August 24.
Nutrition is increasingly becoming
recognized as an important aspect of
thalassemia care, and this survey helps
to paint a picture of nutritional practices
in the thalassemia community and to inform
government leaders of patient concerns
and needs.
who can utilize it in
25.5%
A big “Thank you” to the 113 thalassemia
patients and caregivers and 33 thalassemia
health care providers that responded
to CAF’s online Survey on Nutrition
Practices in Thalassemia.
73.9% of patients take vitamin D.
72.8% take calcium.
More than 75% of health care
providers measure micronutrient status.
90%
of providers typically prescribe
treatment if micronutrient levels are too
low or too high.
Key learnings derived from the survey
include:
•
Patients need more specific guidance
regarding nutrition and the role and
importance of micronutrients.
care.
•
Physician interest in nutritional issues
should be cultivated.
•
Patients are highly responsive and
interested in this topic.
To view the survey, go to
www.tinyurl.com/CAFNutrSurvey.
To request a copy of the executive summary
of the Nutrition and Hemoglobinopathies
Working Group meeting when available,
email [email protected].
National Executive Director
“This issue of Lifeline is dedicated to those
who make a difference. We hope to
inspire others to join them so we can
make an even greater difference.”
organizations," says CAF National Executive
Director Gina Cioffi. “CAF is grateful that
the generous, dedicated brothers and
sisters of OSIA are undertaking this
marvelous project. The thalassemia
community is so fortunate that the members
of OSIA understand the importance of
the work we do and support our efforts
so whole-heartedly.”
“The fight against thalassemia is one
that affects people of Italian descent
in a very real and meaningful way,”
says Sylvia Summa, OSIA’s National
Cooley’s Anemia Chairperson.
“The brothers and sisters of OSIA have
a commitment to fighting thalassemia and
we will not stop until a cure is found.”
A Few Steps on May 1st Can Mean
a Whole New Future For Children
Born with Thalassemia!
CAF and TAG’s 1st Annual Care Walk on May 1st, 2011 will raise funds to fight thalassemia.
Our “Care Walk” is unique because you have the flexibility to determine where you want
to walk and can plan an event that works for your region.
You determine what your Care Walk route will be:
around your block, in a local park, on a boardwalk, around a nearby lake, etc.
We encourage everyone to join together through our Facebook page on May 1st
by posting photos and comments about your walk. Along the way, we also hope
you send tweets so that we can all share in this walk experience from across the nation.
You can make a difference – and all you have to do is walk.
For more information, please contact Alyssa Youngerman
at the Cooley’s Anemia Foundation ([email protected] or 212-279-8090 ext. 208)
Cooley’s Anemia Foundation
3
Former NFL-er Takes Cigar Smoker to Touchdown
Patient Profile
Laurice Levine
“Four years ago, I went to the CAF’s Cigar
Smoker for the first time. I was totally blown
away by what I heard. I was so moved that
I said, ‘What can I do? I have to do
something to help.’ There was no way
I could just sit back and NOT get
involved.”
“I know how important the Cigar Smoker
is to CAF. This is one of the organization’s
biggest fundraisers, and how well it does
affects what the Foundation is able to do.
So I wanted to make sure we did the best
we could, especially with the economy
the way it is.”
So says Louis D’Agostino, the former
NFL running back who was the honoree
at CAF’s 2010 Cigar Smoker, one of our
most important fundraising events.
“I spoke to Cigar Smoker Committee Chair
Frank Fusaro and immediately joined the
Committee, which let me see firsthand
the incredible job they do. Frank has this
incredible attention to detail that shows
in how smoothly the whole event goes.
And when the Committee members
asked me to be the honoree this year,
I of course agreed right away.
“I’m extremely proud of how well the
Cigar Smoker did this year,” says Frank
Fusaro. “But I also know we need to do
even better – and we can do that. We can
raise even more money – IF we get even
more people involved on our Committee.
With dedicated people working on the
event, we can make sure that CAF is in
the position to move forward and move
fast on the road to a cure.”
If you would like to join the Cigar Smoker
Committee, please contact Tony Laurino at
(631) 863-0532 or [email protected].
Study Explores Pregnancy in Thalassemia
A recent study published in Haematologica
(Vol. 95, Issue 3) examined pregnancy
in women with thalassemia, an area
of increasing interest in the thalassemia
community.
Entitled "Pregnancy and β-thalassemia:
an Italian multicenter experience," the paper
examined 58 pregnancies among 47 women
with thalassemia major and 17 pregnancies
in women with thalassemia intermedia
at four centers in Italy. The study reports
that conception was spontaneous in all
of those with thalassemia intermedia;
among those with thalassemia major,
gonadotrophin-induced ovulation was
required in 33 of the women.
According to the study, 91% of the
pregnancies among thalassemia major
patients resulted in live births (45 single
births, 5 sets of twins, one set of triplets).
The authors also report that no secondary
complications of iron overload developed
or worsened during pregnancy. There was
4
Cooley’s Anemia Foundation
a higher prevalence of pre-term births
(32.8%), but the authors state that this
was primarily related to multiple pregnancies
and precautionary measures. Women with
thalassemia intermedia who had never been
transfused or who had only minimal
transfusion prior to pregnancy were found
to be at risk of severe alloimmune anemia
if transfusions were required during
pregnancy. (Decreased hemoglobin levels
necessitated transfusion in 11 of the 17
thalassemia intermedia pregnancies.)
Of the 17 pregnancies in thalassemia
intermedia known to the researchers,
15 resulted in live births.
The authors also state that "cardiac function
was not impaired during pregnancy."
One patient did experience worsening
of T2* scores, but the authors suggest that
this was due to the timing of the second
MRI reading; as it was taken one month
after delivery, the patient was still off
chelation. The authors also stated that
"it is strongly recommended that
thalassemic women wishing to become
pregnant undergo a complete evaluation
of organ iron overload, including MRI T2*
and SQUID, prior to pregnancy."
(In the United States, Ferriscan/R2 readings
are often used for liver iron rather than
those provided by SQUID, together with
T2* cardiac assessment.)
The study concludes that "provided a
multidisciplinary team is available, pregnancy
is possible, safe and usually has a favorable
outcome in patients with thalassemia."
The authors are state the need for larger
and more detailed studies, especially
in thalassemia intermedia.
TAG President
because we have a hard-working and
educated team of board members who are
very dedicated and passionate about
the cause.
Complete the following sentence as you
would like: “In five years…”
Laurice Levine
Laurice Levine is the new President of TAG
(Thalassemia Action Group), CAF’s patient
run support group. We spoke with Laurice
recently about her new role.
How do you feel about being the new
TAG President?
I feel honored. There are some large shoes
to fill. Gargi was a phenomenal president,
as were many others before her.
What do you see as some of the challenges
ahead for TAG over the next couple of
years?
As with so many things these days,
TAG and CAF have been impacted by the
economic downturn. Funding is a challenge
and this is very disheartening, both as the
TAG president and a patient. However,
despite a reduced budget, TAG still planned
and implemented six outreach events
and each one was a success. We are
dedicated to providing services to patients
and families.
Another challenge is patient
involvement. The TAG board is much
smaller than it was a decade ago.
Patients have countless demands on them,
but it is my hope that people will
reenergize, refuel and renew. I believe
that TAG is a unique organization and that
patients can really benefit from joining us
and vice versa – new patient supporters
bring fresh experiences and talent that
will enable TAG to do even more.
What do you see as TAG’s biggest
strengths/assets?
We do a lot with very little. As I mentioned
above, we accomplished so much last year
In five years, I would like TAG to have
a huge budget and a full board of people
who are all dedicated and hard-working,
so that we could put on an outreach event
in any state that wanted/needed one and
a TAG conference in every Disney Park
around the world.
What do you want to say to any people
with thalassemia who are not part of TAG?
TAG is a diverse, talented, energetic
and fun group. We would welcome past
members back with open arms, and we
appreciate the experience that they could
bring to the table. For new members,
this could be an experience of a lifetime:
TAG changed mine when I was 25 and met
another patient for the first time in my life.
Being on TAG is an opportunity to bond
with other patients, build lasting friendships,
learn more about thalassemia and yourself,
give back to the thalassemia community,
and help others who are walking on
the same path. If you are interested,
please contact me at [email protected]
or 510-409-9664. We would love to have
fresh blood (pun intended)!
What else would you like to say?
I would like to thank TAG for nominating
me and for trusting me to lead us in the
face of some very challenging times.
I want to recognize the TAG board for their
dedication and hard work. I would also like
to thank CAF for their years of support
and for continuing to fund us despite tough
economic times. CAF and TAG work hand
in hand to support patients and families,
and I know we will continue to do so
for many years to come.
Freezin' for a
Reason at NJ
Elks Miracle
Plunge
“Daddy didn’t get very wet, but the
Nor’easter was so cool!”
My younger daughter said that when telling
people about my participation in this year’s
“Miracle Plunge: Freezin’ for a Reason,”
the “polar plunge” that raises funds for
CAF and for the NJ Elks’ Camp Moore.
Organized by the NJ Elks, 147 people,
including yours truly, signed up
to swim in the icy waters off Belmar, NJ
on March 13. An incredibly fierce
Nor’easter (that’s a powerful storm,
to all you landlubbers) blew in, and safety
precautions meant that we only got to wade
in the frigid surf rather than submerge our
entire bodies and bob up and down like
a frozen popsicle.
Craig Butler (center), with daughters
Sure, I was disappointed that only my lower
legs suffered frostbite – no, really, I was! –
but the day isn’t really about getting frozen:
it’s about raising money for a good cause.
And I was proud to add the $815 that
I raised from good friends and family to the
grand total of $76,000 generated by all the
people that participated.
CAF thanks the NJ Elks for being such
incredible allies in the fight against
thalassemia. And I thank them for letting
me participate in this year’s effort and
to be able to do my part to help.
- Craig Butler
Cooley’s Anemia Foundation
5
CAF-Funded Research Advances
Treatment & Search for Cure
The Cooley's Anemia Foundation has
awarded $329,000 in medical research
grants and fellowships for the 2010-2011
award period.
Funding medical research has long been
one of CAF's primary objectives, and the
Foundation is proud to have made
significant contributions to the
understanding and treatment of thalassemia
through its research funding.
The $329,000 represents one new first year
fellowship; renewals of five second-year
fellowships; funding of one new medical
research grant; continuation of funding
for the first year of one medical research
grant; and renewal of the second year
of the gene therapy grant.
The new first year fellowship, funded
at a level of $32,000, has been awarded
to Jackie Eun-Ah Lim, PhD, of DUKE
UNIVERSITY MEDICAL CENTER.
Dr. Lim's project is entitled "Identifying
genetic modifiers of iron stores in mice"
and focuses on identifying genes that
modulate aspects of iron absorption,
utilization, recycling and storage. Identifying
these genes will help to develop potential
targets for managing the iron overload that
accompanies thalassemia.
The renewals of five second-year
fellowships, funded at a level of $32,000
each, were awarded to the following:
Paula Goodman, Fraenkel, MD, of BETH
ISRAEL DEACONESS MEDICAL CENTER,
for the project "Modifiers of hepcidin
expression as potential therapies for betathalassemia related iron overload." Hepcidin
is a hormone that helps to regulate iron
absorption. Dr. Fraenkel's research
will investigate ways to modify hepcidin
expression with the goal of helping
to prevent and treat iron overload
in thalassemia.
$
6
Wenjie Chen, PhD, of DUKE UNIVERSITY
MEDICAL CENTER, for the project
"The Role of Hemojuvelin in Heart and
Muscle." Hemojuvelin is a protein that plays
a role in hepcidin expression. This study
will examine if hemojuvelin in the heart
and muscle can play a role in regulating
hepcidin, which would add to knowledge
that can be used to treat iron overload.
Sara Gardenghi, PhD, of WEILL CORNELL
MEDICAL COLLEGE, for the project
"Increased hepcidin expression in mice
affected by beta-thalassemia reduces iron
overload with no effect on anemia." As with
the previous two studies, Dr. Gardenghi's
focuses on the role of hepcidin in regulating
iron absorption and seeks to discover more
information that can be used to treat
excess iron in people with thalassemia.
Rebecca J. Abergel, PhD, of LAWRENCE
BERKELEY NATIONAL LABORATORY,
for the project "Design, Evaluation and
Development of Orally Active Multidentate
Iron Chelators." Dr. Gardenghi's project
will help to identify compounds that have
the potential to be developed into new
treatments for removing excess iron from
the blood. While there are currently two
FDA-approved chelating drugs available
in the U.S., more are needed in order
to ensure that each individual patient is able
to receive treatment that is best suited
to his/her specific needs.
Daniel Strongin, PhD, of FRED
HUTCHINSON CANCER RESEARCH
CENTER, for the project "A new strategy
to ensure robust gene expression from
gene therapy vectors by positioning
the transgene within the nucleus." Put in
the simplest terms, this study focuses
on the role of the vector (the means by
which a corrected gene is introduced into
a patient's cells) and how it can be modified
to help ensure that the new, corrected gene
will reproduce in an appropriate way. Gene
Your Dollars At Work
CAF is able to be a significant funder of thalassemiarelated medical research only because of the donations
of people like you. Thank you to all our donors!
Cooley’s Anemia Foundation
therapy holds great promise in terms
of potentially providing a cure for
thalassemia in the future.
Silvia Titi Singer, MD, of CHILDREN’S
HOSPITAL & RESEARCH CENTER AT
OAKLAND received funding for the first
year of her medical research project for
“Determination of Reproductive State
and Relation to Pituitary Iron Overload
in Thalassemia Major Patients.”
This study will examine 30 patients
to determine how fertility measures may
correspond to iron deposition, helping
to increase our understanding of this
relationship and to provide information that
ultimately may lead to strategies to better
preserve fertility in thalassemia.
Ellen Fung, PhD, RD, of CHILDREN'S
HOSPITAL & RESEARCH CENTER AT
OAKLAND, received continuation funding
for her first year medical research grant for
"Good Vibrations: A pilot study of vibration
therapy to improve bone health in patients
with thalassemia induced osteoporosis."
Many people with thalassemia suffer from
a form of osteoporosis (weak bones),
a condition that is more commonly found
in people of more advanced age than the
typical thalassemia patient. This study will
evaluate the effect of "vibration therapy"
on bone density, size and strength among
a small group of people with thalassemia.
This funding is in the amount of $30,000
and represents the second half of her first
year funding ($60,000).
Derek Persons, MD, PhD, of ST. JUDE
CHILDREN'S RESEARCH HOSPITAL
received renewal funding of $75,000 for
the second year of his gene therapy
project, "Translations Research in Adult
Thalassemia." This project focuses on the
role of the vector in gene therapy.
Dr. Persons' work seeks to develop
a breakthrough in therapeutic vector
production that will increase the probability
of success in a human gene therapy clinical
trial.
2011-2012 research applications are now
available. Contact [email protected]
or (212) 279-8090 for information,
or go to www.cooleysanemia.org.
The Symposium included many current and past recipients of research funding from CAF
Thalassemia Community Energized
by 9th Cooley's Anemia Symposium
From October 21 to October 24, 2009,
the halls of the prestigious New York
Academy of Sciences (NYAS) were
overflowing with doctors, scientists, health
care professionals and patients from around
the world, all of whom were there for the
9th Cooley’s Anemia Symposium, presented
by CAF in collaboration with NYAS.
More than 300 individuals attended this
landmark event, the latest in a series
of CAF-sponsored symposia that date back
to 1965. These symposia fulfill a vital
function in bringing together the top experts
in the field of thalassemia to present
the latest, most up-to-date information
on research and practices in a wide range
of thalassemia-related areas, including gene
therapy and bone marrow transplantation
approaches to a cure.
The 9th Cooley’s Anemia Symposium
was organized by Elliott Vichinsky, MD,
Children’s Hospital Oakland; Ellis Neufeld,
MD, PhD, Children’s Hospital Boston;
Kathy Granger, PhD, NYAS; and Gina Cioffi,
Esq., CAF. Major sponsors included
ApoPharma and Novartis Oncology.
Additional sponsors included FerroKin
Biosciences, HemaQuest Pharmaceuticals,
Inc., and Resonance Health.
The project was also supported by Award
Number R13HL096359 from the National
Heart, Lung and Blood Institute, and the
National Institute of Diabetes and Digestive
and Kidney Diseases.
“Overall the meeting was a great success,”
says Dr. Neufeld. “Scientists and clinicians
from around the world came together in
a wonderful setting to discuss the latest
issues in thalassemia care and investigation.
“One outstanding feature of the meeting
was the diversity of scientific approaches
discussed to address the key problems
in thalassemia: gene therapy, fetal
hemoglobin induction, stem cell
transplantation from unrelated donors,
and the emerging role of hepcidin and iron
metabolism were all discussed by more than
one speaker. The long-term end-organ
damage from thalassemia to the bones,
the pituitary and endocrine glands, the heart,
and the liver were discussed in depth,
as were the current state of chelators.
“The keynote talks were terrific,”
Dr. Neufeld added. “Dr. Chaim Hershko
discussed the history of chelation and where
the field finds itself today. Alan Cohen
discussed the central problem of adherence
and non-adherence to chelators, and
Sir David Wetherall discussed the global
burden of thalassemia.”
Dr. Vichinsky stated that “the 9 meetings
have highlighted international medical
advances in the treatment of thalassemia
that have led to dramatic changes in
the understanding and clinical management
of this disease, including the establishment
of chronic transfusions to improve quality
of life for thalassemia patients and the
initiation of desferoximine chelation and its
potential benefits. This current Symposium
addressed quality of life, marriage and
pregnancy, and long term survival, as well as
new technologies to diagnose iron overload
in multiple organs, before damage can occur,
are outlined. This recent meeting also
reported the first e-beta thalassemia patient
treated with gene therapy.
Sir David Weatherall, founder of the
Weatherall Institute of Molecular Medicine
and one of the most esteemed and highly
regarded names in the field of thalassemia,
stated that “the CAF-NYAS meetings have
been a major force in the field. It’s the only
real connection between patients and
families and the medical profession at
a level that allows for a kind of real genuine
discussion of their problems and how we
may train doctors in the better management
of the disease...This kind of coming
together just hasn't happened in very many
other branches of medicine. CAF has been
critically important."
CAF was thrilled with the level of the
science reported at this symposium and
at the implications this has for future
advances in treatment and in the search
for a cure.
The 9 CAF-funded
Cooley’s Anemia
Symposia
have been responsible for
spreading information on major
advances in the field of
thalassemia and impacting the
care of patients worldwide.
The 9th Cooley’s Anemia
Symposium is the subject of
the August 2010 issue of the
Annals of the New York
Academy of Sciences,
available now.
Cooley’s Anemia Foundation
7
CAF successfully
CAF Represents Patients
at National Blood Disorders
Conference
CAF National Executive Director Gina Cioffi
made several presentations at the
1st National Conference on Blood Disorders
in Public Health, held in Atlanta on
March 9-11.
Entitled “Exploring Barriers and Facilitators
to Treatment Adherence Among People
with Thalassemia,” one presentation drew
on information obtained through a series
of focus groups with patients of different
age groups, as well as with caregivers
of patients, which explored their views
on various adherence issues.
CAF patient needs were also discussed
during the plenary session on “Future Public
Health Directions: The Partner Perspective.”
These presentations enabled CAF to once
again educate key figures in governmental
agencies and medically-focused non-profits
about the specific needs and challenges
associated with the thalassemia community.
Presented by the Centers for Disease
Control and Prevention (CDC) National
Center on Birth Defects and Developmental
Disabilities, Division of Blood Disorders,
in partnership with the Health Resources
and Services Administration, the National
Heart, Lung, and Blood Institute, and
the American Society of Hematology,
the purpose of the conference was to serve
In Mem oriam
We regretfully report the loss of
Cooley’s anemia patients
Mario J. Colombo
Omari Kissoon
Lydia Salib
Salvatore Scoglio
Ben Woffindale
and extend our sympathies
to their friends and families.
8
Cooley’s Anemia Foundation
as the catalyst for developing a nationally
recognized public health framework for
promoting the health of and improving
outcomes among people at risk for
or affected by a non-malignant blood
disorder.
The theme of the Conference was “Making
the Connection,” and the event lived up to
that theme. Representatives of thalassemia,
sickle cell, hemophilia, Diamond-Blackfan
anemia, thrombosis, hemochromatosis and
other blood disorders gathered together
and shared information about their disorders,
the common challenges they face and how
they can work together to ensure that blood
disorders are better understood as a public
health issue by the general public.
The Conference organizers identified five
key goals which guided them as they
planned this ambitious event:
• Present innovative public health
strategies to reduce/prevent blood
disorders or their complications.
• Showcase effective evidenced-based
public health strategies designed
to prevent and/or eliminate blood
disorder-related health disparities.
• Provide opportunities for informationsharing and networking.
advocated for the
initiation of a
Patient Learns and Earns for CAF
collaborative agreement
between the CDC and
seven major thalassemia
treatment centers,
providing additional
resources to focus on
improving adherence,
which will benefit
patients throughout
the country.
• Explore science, policy, education,
program planning, implementation,
and evaluation to enhance public
health approaches and strategies
to promote health and improve
outcomes among people at risk for
or affected by blood disorders.
• Provide an interactive forum for
attendees to discuss important and
emerging public health issues in
blood disorders.
In addition to Gina Cioffi, National
Communications Director Craig Butler and
Social Worker Kathleen Durst represented
the Cooley’s Anemia Foundation at the
Conference.
APP Offers Generic Desferal
CAF has been notified that a second
pharmaceutical company, APP
Pharmaceuticals, has begun manufacturing
the generic form of deferoxamine.
You may also need to check with your
insurance plan to determine if there is a
difference in coverage between the generic
form of deferoxamine and Desferal.
If you wish to receive the brand name form
of deferoxamine (Desferal) rather than the
generic form, please make sure that your
doctor writes "DAW" (Dispense As Written)
on your prescription. Many pharmacies
have a policy of filling prescriptions with
generic equivalents if "DAW" is NOT on the
prescription.
Generic forms of brand name drugs should
be bioequivalent to the brand name form
and CAF does not recommend one form of
deferoxamine over another; however, some
patients have a preference and we want to
make sure that these patients receive
the chelator in the form they desire.
Perspective from
a Patient Advocate:
Aaron's Own
Words about
Thalassemia
As I write this, I realize that
within thalassemia is a hidden
jewel: the treasure of
dedication and passion.
Thalassemia is no longer a
monster to me; rather, it is part
of me, and it breathes the fire of
passion and inspiration throughout
my body. What was once a weakness,
a flaw, is now my prized gem. The darker
my circumstances, the brighter its light
will shine. It is because of thalassemia
that the motivation to succeed runs
through my veins. It is because of
thalassemia that I have learned to endure
pain. And it is because of thalassemia
that I am able to lead a productive
life today.
Always embrace obstacles, for obstacles
are actually valuable lessons cleverly
disguised. Without confronting obstacles
you will never grow. Obstacles will never
crush you as long as you have the
resolve to overcome them.
Donate Your
Vehicle & Fight
Thalassemia
Ready to get a new car, boat or other
vehicle? Donating your old one to CAF
helps raise funds for the fight against
thalassemia while giving you a valuable
tax deduction.
Those in the tri-state (NY-NJ-CT) area
who wish to donate a vehicle can contact
Moe at 877-445-7668 or
Aaron Cheng, a California teenager
with thalassemia, has literally used his
brainpower to raise more than $1,600
for CAF. Now how smart is that!
"I'm proud to announce that my school won
sixth place out of over five hundred teams
in California," Aaron tells us. "Since
California is historically the state that
continuously wins the national competition
(and which won again this year), we are
on par with other national-level teams.
At the state competition, I won a bronze
medal in the ‘Science: Chemistry’ category
and earned the third highest overall score
on my team.
Aaron’s commitment demonstrates that
one person can really do a lot to help fight
thalassemia. CAF congratulates Aaron
not only for his initiative in raising funds
for thalassemia but for his impressive
achievement as part of the Academic
Decathlon. We wish him the very best
of luck in the coming year!
Aaron Cheng
In December, 2009, Aaron started his
"learn and earn" campaign. He participated
in the Academic Decathlon, a rigorous
scholastic program requiring enormous
amounts of hard work as students push
themselves to the limit in order to perform
well academically. Aaron set up a personal
fund raising pagethrough Firstgiving.com
and asked friends, family members and
supporters to make donations to CAF as he
embarked on this project. Aaron ended up
raising an impressive $1,613.
Alyssa Youngerman at (800) 522-7222
([email protected]).
Those in other parts of the country can
go to http://www.donatecar.com or contact
Alyssa Youngerman at 800-522-7222
([email protected].)
Just make sure you indicate that your
donated vehicle is to help the Cooley’s
Anemia Foundation.
Thank you.
How Does
Firstgiving Work?
A personal fund raising page can be
used for any number of purposes
- to get sponsors for your participation
in a marathon, to ask for donations
instead of presents for a birthday or
other special occasion, or simply to let
people know about your support of
CAF and the fight against thalassemia.
It's easy, too. Simply:
1. Go to www.FirstGiving.com.
2. Select the "Raise money"
option.
3. Choose Cooley's Anemia
Foundation as your
nonprofit.
4. Set up your page.
5. Send out your emails!
Personal fund raising pages are
an important way of helping CAF raise
much needed funds. We hope you will
join us by using this fast, simple tool.
If you have any questions, please
contact Alyssa Youngerman
at (212) 279-8090 or
[email protected].
Cooley’s Anemia Foundation
9
Studies Look
at Exjade and
Cardiac Iron
Two recent studies examine the efficacy
of the oral chelator deferasirox (Exjade)
in reducing cardiac iron in patients with
thalassemia.
“Efficacy of deferasirox in reducing and
preventing cardiac iron overload in
β-thalassemia,” published in the March 25,
2010 volume of the journal Blood, relates
the results of a one-year prospective,
multicenter trial involving 192 patients.
The patients were divided into two arms:
the cardiac iron reduction arm and the
prevention arm.
The cardiac reduction arm included 114
patients whose T2*, liver iron concentration
and ferritin measurements indicated the
possibility of cardiac issues. The prevention
arm included 78 patients whose
measurements indicated a more typical
cardiac health profile. Patients in both
arms were treated with deferasirox.
The authors summarize their results
by stating that “deferasirox treatment
for 1 year removed iron from the heart
and maintained LVEF in patients with
β-thalassemia with mild, moderate
and severe myocardial siderosis.
[Editor’s note: Patients with the worst
cardiac iron overload, T2*<5 msec, were
not included in this study.] In patients with
normal myocardial iron levels, deferasirox
maintained myocardial iron levels
and improved LVEF.”
The second study, “The effect of
deferasirox on cardiac iron in thalassemia
major: impact of total body iron stores”
has been prepublished online ahead of print
in the journal Blood. This prospective,
multicenter, open-label, single-arm study
examines the response of cardiac and liver
iron to deferasirox therapy for 18 months.
Twenty-eight patients were enrolled;
one withdrew prior to commencement,
leaving 27 in the intent to treat population.
Of the 27 patients, 22 completed the trial.
All patients in the study had abnormal T2*
and normal LVEF. The results of this trial
include:
•
The results after one year were as follows:
•
•
•
In the cardiac iron reduction arm,
T2* measurements improved from
a baseline of 11.2 (+/- 40.5%) to
12.9 (+/49.5%), an improvement
of 16%. LVEF (left ventricular ejection
fraction) was unchanged.
In the prevention arm,
T2* measurements were unchanged,
and LVEF showed a 1.8% increase.
In both arms, there was an overall
decrease in LIC and ferritin levels,
although 17% of patients in the cardiac
iron reduction arm and 20% of those
in the prevention arm saw an increase
in ferritins.
•
•
In the 22 patients completing the trial,
LIC improvement was 16% and T2*
improvement was 14%. Changes in
LIC and T2* were significant at the
6-month and 12-month points, but were
no longer significant at 18 months.
Cardiac iron improved by 24% in
patients having LIC in the lower two
quartiles (lower LIC) and worsened by
8.7% in patients having LIC in the upper
two quartiles (higher LIC).
13 patients saw cardiac improvement;
the remaining participants saw their
T2* scores worsen. The reason for this
second set of patients being nonresponsive to the drug cannot be
definitely ascertained; however, it seems
likely that inadequate compliance may be
a significant factor.
Did You Know...
...That CAF’s efforts have helped to ensure that
T2* measurements are now available as a way
to non-invasively and acurately assess health
among our patients?
10
Cooley’s Anemia Foundation
•
LVEF was unchanged at all time points.
•
The authors conclude that
“monotherapy with deferasirox was
effective in patients with mild-tomoderate iron stores but failed
to remove cardiac iron in patients
with severe hepatic iron burdens.”
When discussing the trial, the authors state
that “the most striking observation was
the clear demarcation between responders
and non-responders…patients having
severe hepatic iron overload may warrant
more aggressive therapy if the therapeutic
goal is rapid cardiac iron clearance,
the patient already has severe cardiac iron
deposition, the patient is known to be
noncompliant, or facilities for monitoring
cardiac iron and cardiac function are limited
or unavailable.”
The authors also state that “cardiac iron
clearance was also a powerful function
of final LIC, sharply increasing as LIC
approached normal levels…The simplest
explanation is that iron chelation with
deferasirox is a competitive process,
with cardiac effectiveness improving
once liver iron is depleted.”
“These two important studies expand the
medical literature about issues that many
clinicians and patients may have already
learned about how to use deferasirox
(Exjade),” says CAF Medical Advisory
Board Chair Ellis Neufeld. “Both studies
focus on patients with elevated cardiac iron
levels, or on preventing elevated iron in
the heart, as assessed by cardiac MRI T2*.
“While many patients with moderate heart
iron by MRI (T2* between 8 and 20 msec)
can have successful lowering of cardiac iron
(rise in T2*), deferasirox is probably NOT
the optimal treatment in patients with the
worst cardiac iron levels (patients with
T2* lower than 5 msec weren’t tested in
the first study mentioned above, and those
with levels below 6 msec didn’t respond
in the second study). Such patients should
talk to their hematologist about using
continuous deferoxamine, perhaps
in combination with deferiprone. Achieving
the best results with deferasirox may
require high doses in some individuals,
and even with higher doses, a fraction
of patients don’t respond at all.”
If you would like more information, please
contact CAF at [email protected].
There’s nothing wrong with getting a little carried away while golfing.
Diane, Rob and Robert Aiello
Volunteer Spotlight: Robert Aiello's Golf Outing is a Hole-in-One
The Staten Island chapter of CAF held
its 2010 Cooley's Anemia Golf Outing on
April 28. CAF spoke with Golf Outing Chair
Robert Aiello, whose wife Diane has
thalassemia.
How did you and Diane meet?
Diane and I met at a Perkins restaurant.
I ate there often and she was the night
waitress. Flirting turned to a long friendship;
eventually we started dating and have now
been married for almost four years with a
great son who is two and another one on the
way.
How did you react when Diane told you
about thalassemia?
I didn’t really understand what it was,
so I did some research on my own.
I couldn’t believe what she needed to go
through on a daily basis with regard to
administering her medication for chelation.
Why do you do this golf outing?
It gives me some satisfaction that I made
a contribution to raise some of the funding
for research and to find a cure.
What do you want to tell people about the
golf outing?
Besides the fact that the funds going to
a charity that is near and dear to all the
patients and family members, I want to
mention that we try to make our outing very
different. We have multiple holes where we
have little "extras," like complimentary beer,
wine/mozzarella, liquor, sangria, hole-in-one
contests and more.
CAF depends upon people like you who are
willing to pitch in and do something to raise
money to fund medical research, our patient
programs, and our other services. What
would you say to other people to encourage
them to get involved?
Working with the Cooley’s Anemia
Foundation has enlightened me in so many
ways to the needs of the organization.
Knowing that my efforts make a difference
and that I can do it in a way that is fun and
allows me to make new friends at the same
time is really rewarding. Since I am very
busy in my own business, I have also tried
to interlock the two so that I can justify the
time I spend on the outing. For instance, I
invite some of my salesmen and customers
as guests of my company. It's an excellent
networking event and that helps justify the
time I put into this.
On the NYS OSIA Menu: Total Support for CAF
The wonderful folks of the New York State
Grand Lodge of OSIA (Order Sons of Italy
in America) once again demonstrated their
commitment to the fight against thalassemia
by raising more than $20,000 at their
12th Annual Culinary Classico "Year 2010
Dine Around" on April 6, 2010.
A large crowd came out to sample
delicious dishes from some of Long
Island's finest restaurants and to spend
a wonderful evening with some of the most
large hearted folk around. A grand total
of $21,059 was raised, which will be added
to other donations raised by OSIA's
brothers and sisters in their steadfast
quest to help CAF end thalassemia.
CAF thanks the New York State Grand
Lodge of OSIA for its sterling efforts
and sends special thanks to Joanie
Rondinelli for her superb leadership
in planning this year's event.
Joanie Rondinelli, Josephine Mannino,
Molly Vollone, Carmel Lamont
Cooley’s Anemia Foundation
11
Person-to-Person Connection:
Parents Share Experiences
Through Conference Calls
“I highly recommend any parent of a child
with thalassemia join in on these calls!”
as an opportunity to feel part of a
community.
That’s what Mary, one such parent, says
about the monthly “call-ins” that CAF Social
Worker Kathleen Durst has been
conducting, usually on the 4th Tuesday
evening of each month.
If you are interested in learning more,
contact Kathleen at
[email protected]
or (212) 279-8090.
These call-ins are a chance for parents to
connect with other parents and have a lively
exchange of information about anything from
how to deal with a child that hates to
chelate to suggestions on helping a child’s
self-esteem to the latest information on
bone marrow transplantation. Each call is
moderated by Kathleen and has a general
topic for discussion, as well as time for
parents to voice concerns on “off-topic”
matters.
“The support that we get from each other is
one of the reasons I call in,” says Mary,
who also appreciates hearing about the
experiences of parents with children older
than her own who can let her know what to
expect.
Hema, another parent who is a regular on
the call-ins, says that “the camaraderie, the
feeling that I’m not alone, is very valuable to
me. Sometimes the only other place to
meet other parents is in the clinic, which can
CAF's "Summer Lovin'" event at Cavo Cafe
Lounge was a blast, a perfect way to
welcome the summer.
Need to Talk?
Call Kathleen
Kathleen Durst
be very public. And when I’m on
the phone, I don’t worry about
whether someone will think one
of my questions is stupid or
obvious.
A crowd of happy, festive supporters made
Cavo, already one of the hippest hangs in
Astoria, into the place to be on June 9.
It was a night for mingling and celebrating,
light on program and heavy on delicious
food, outstanding drinks and, best of all,
CAF Social Worker Kathleen Durst is
also available to speak one-on-one with patients
and parents, either in person (for those in the
New York City area) or over the phone.
This is an excellent opportunity to seek advice,
work out solutions to problems or just
talk about things that are on your mind.
“Often, someone else has the
same question or problem that I
do. When I hear from others, I often
find the answer I need; even if I don’t,
the answers others give can trigger a new
line of thought so that I can find a solution
that does work for me.”
These monthly call-ins are an excellent way
for parents to ask questions, seek advice or
share successes with other parents, as well
Malcolm J. McPherson, Jr., Special Deputy
Grand Exalted Ruler, New Jersey State
Elks Association and John Sentner, Past
State President, Miracle Plunge Advisor,
presented the check to CAF National Fund
Raiser Alyssa Youngerman and CAF
Patient Services Manager Eileen Scott.
CAF thanks CAF Board member Frank
Somma and the New Jersey chapter for
their commitment to working with the NJ
Elks to spread information about and
awareness of thalassemia.
John Sentner, Alyssa Youngerman, Eileen Scott,
Malcolm J. McPherson, Jr.
Patients, Supporters Have
a Blast at Summer Lovin'
Diane Kamble, Pio Bonfitto
NJ Elks Support Fight Against Thalassemia
At their annual convention this summer, the
New Jersey Grand Lodge of the
Benevolent & Protective Order of the Elks
made a generous donation of $10,000 to
the Cooley's Anemia Foundation.
A table of dedicated CAF supporters
Contact Kathleen Durst
([email protected]
or (212) 279-8090 for more
information.
Thalassemia
Webinars
Are Coming
In addition to these monthly parent
call-ins, CAF will soon be offering a
series of monthly “webinars,” online
seminars for patients and family
members that will focus on different
topics of interest.
In each webinar, an expert will make a
short presentation and will then
answer any questions. The first topic
is “Practical Behavior Interventions for
School Aged Children,” with Lauren
Melnick, PhD, from Children’s Hospital
Boston (date TBA). Future topics
and dates are being firmed up.
Keep an eye on the CAF website
(www.cooleysanemia.org) or contact
Kathleen Durst
([email protected] or
(212) 279-8090) for more information.
plenty of good conversation with friends.
Thanks to everyone who made the night
such a hit. And special thanks to our Event
Sponsor, Novartis Oncology, for their
generosity. Funds raised go to support
CAF's patient programs.
We look forward to seeing you back at
Summer Lovin' 2011!
Eva Assimacopoulos, George Assimacopoulos
This issue of Lifeline is funded by a
special patient education grant from
Novartis Oncology. This grant will
provide funding for four quarterly issues
of this important publication
CAF thanks Novartis for its valuable
support.
A fun time was on the menu at Summer Lovin’
statement of purpose
EXECUTIVE COMMITTEE
Anthony J. Viola
Amy Celento
Terri DiFilippo
Cammie Brandofino
President
Vice President
Treasurer
Secretary
Carmine Abruzzo
Nunzio Cazzetta
Janice Cenzoprano
Peter Chieco
Ralph Colasanti
Robert Ficarra
Dean Hernan
Laurice Levine
Ellis Neufeld, MD
Concetta Paradiso
Frank Somma
Gina Cioffi, Esq.
Craig Butler
Liz McGill
National Executive Director
Lifeline Editor
Designer
The Cooley’s Anemia Foundation, incorporated in 1954, is the only national, nonprofit
health organization dedicated to serving patients afflicted with various forms of
thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia.
the foundation’s mission
• Advancing the treatment and cure for this fatal blood disease.
• Enhancing the quality of life of patients.
• Educating the medical profession, thalassemia trait carriers and the public
about thalassemia/Cooley’s anemia.
CAF : 330 Seventh Avenue, #900 New York, NY 10001 (800) 522-7222 (212) 279-8090 (212) 279-5999 FAX www.cooleysanemia.org
Reproduction of material published in Lifeline for educational purposes is encouraged, provided it is accompanied by the following attribution: according to Lifeline, the national newsletter of the Cooley’s Anemia Foundation.
12
Cooley’s Anemia Foundation
Cooley’s Anemia Foundation
13
Michelle - nowadays
Chicago Chapter
Queens Chapter
The Chicago area chapter hosted a pizza-andbowling night with the Thalassemia Action Group
(TAG), CAF's patient run support group, on
Saturday, July 17. This was a free event for all
patients and families in the area or anyone who
has helped the Chicago area chapter, and was
held at Stardust Bowling Lanes in Addison, IL.
Information about the chapter: Teresa Tomaino
[email protected]
Vetro by Russo's on the Bay is the setting for
the Queens chapter's Cigar Night on October 4.
This spectacular Howard Beach restaurant is the
perfect location for a night that includes a top
shelf open bar, passed hors d'oeuvres, a full
buffet, a live and silent auction, and, of course,
cigars - all for only $150 per person.
Long Island Chapter
Save the date! The Long Island chapter of
CAF has decided on November 20, 2010 as the
date for the 50th Anniversary Gift of Life Ball.
This year's event will feature not only dining and
dancing but also a casino for added fun.
The honoree is Art Harris, Knights of Columbus
State Deputy, NY Council. Things kick off
at 7:00 at Leonard's of Great Neck.
Ticket donations are $150 per person.
Earlier in 2010, the Long Island chapter held
a very successful Golf Outing at Wheatley Hills
Golf Club, as well as a special “Brunch at
Tiffany’s” event at Milleridge Cottage in Hicksville,
NY. The chapter also participated in the
Lord & Taylor bash at the Garden City branch
of the popular department store.
Contact: [email protected] or
(516) 248-6770.
The chapter’s annual Good Friday Dinner Dance
honored Philip Marino, Chief, Bureau Operations
for the New York City Department of Sanitation.
On June 3, the Columbia Association Department
of Sanitation-City of New York held its
15th Annual Golf Classic as a benefit for the
chapter. And on August 13, the Queens chapter
was very fortunate to offer a very limited number
of seats in Modell’s Clubhouse for the New York
Mets-Philadelphia Phillies game. Finally, the
9th Annual Queens Chapter Golf Classic was
held on September 13 at Brookville Country Club
in Old Brookville, NY.
Information: Alyssa Youngerman
[email protected]
or (212) 279-8090.
Rochester Chapter
Join the Rochester chapter for its weekly Bingo
night every Monday at the Empire Bingo Hall,
360 Empire Blvd. Information: 716-482-5587
Staten Island Chapter
Massachussetts Chapter
The Massachusetts chapter of CAF held its
23rd Annual Dinner Dance & Silent Auction
on Saturday, September 25, 2010 from 6:30 p.m.
- 11:30 p.m. at the Hellenic Cultural Center in
Watertown, MA. The event featured a delicious
dinner from Fasano's Catering and wonderful
music from Ambrosiani.
Contact: (617) 332-5952 or [email protected]
New Jersey Chapter
Those lucky enough to be in the New Jersey
area on October 8 should be at the Red Bank
Elks Lodge #233 at 7:00 for the New Jersey
chapter of CAF's "Rollin' on the River" event.
An evening of fantastic food, a great DJ and
significantly discounted drinks for just $20
a ticket. A limited number of bar seats are
available at $15 a ticket.
Earlier in the year, the New Jersey chapter
collaborated with the Staten Island chapter on the
“Let Your Heart Dance,” a long-running tradition
for those who want a truly special Valentine’s Day
experience. And the chapter was once again
responsible for CAF’s involvement with the
New Jersey Elks’ Miracle Plunge “Freezin’ for
a Reason” (see page 5).
Information: [email protected].
The Staten Island chapter’s 27th Annual Fashion
Show, “A Crisp Fall Luncheon,” is scheduled for
Sunday, October 17, at the Hilton Garden Inn,
1100 South Avenue, Staten Island, NY. This is
a wonderful event that is a highlight of the fall
season. Cost is $55 per person, and journal ads
and event sponsorships are available. Contact
Cammie Brandofino at [email protected] or
(718) 761-5380 for information and reservations.
On September 28, the chapter held a special
seminar on thalassemia at the Staten Island
Health & Wellness Expo, at which audiences heard
from a hematologist, a cardiologist and a person
with thalassemia. A month earlier, on August 15,
the chapter participated in a special blood drive
at Our Lady of Pity Church. In addition to its
annual Golf Outing (see page 11), the chapter
collaborated with the New Jersey chapter on this
year’s “Let Your Heart Dance.” Thanks to Frank
and Deborah Somma for continuing to make this
a very special evening.
Chapter information: [email protected] or
(718) 761-5380.
Sufflok Chapter
On the first Monday in February 2010 Suffolk held
its Seventh Annual Indoor Putting Contest and
Luncheon. Approximately sixty-seven two-person
teams participated. The restaurant, Butterfields in
Hauppauge, closes from 12 noon to 5PM and we
set up a 40 foot putting green. It is a great event
to wipe away the winter doldrums. This is an
excellent way to keep benefactors focused on
Cooley's anemia.
Super Bowl Sunday is always a celebration. Cafe
La Strada in Hauppauge closes for the day and
we sell tickets to approximately 100 people to
watch the Super Bowl. This event also keeps
benefactors mindful of Cooley's anemia.
April is Bowl-A-Thon month. One of our
benefactors, the Giaquinto Family, closes Deer
Park Bowling Alley for a night. We sell 16 lanes at
$1,000 a lane. Although it is a fun bowling night
one game is devoted to competitive bowling.
The team with the highest score in one game wins
$1,000. All drinks are provided by the Giaquinto
family and food is provided by the Watral Family.
May is wine tasting month. Tom and Ginny Watral
open their house and wine cellar to approximately
60 people. Each attendee donates $250 for the
privilege of drinking some of the finest wines in
the world. Tom and Ginny also provide a chef who
cooks food to compliment the wines.
You Make the Difference!
Living with thalassemia is incredibly difficult – but things have improved greatly
over the years, and that’s because of people like YOU.
We’ve made a lot of advances
– more humane treatments, longer
lifespans, safer blood – but we still have
a long way to go – fewer complications,
less chronic pain, decreased hospital visits,
normal life expectancy and above all,
a CURE.
Michelle - then
June is dinner dance month. This year Suffolk
honored Jimmy Haugland of Commander Electric.
The event, held at Leonard's of Great Neck,
was a spectacular function. The chapter raised
$320,000 at this event.
Upcoming events for 2010 are our Golf Classic
at Nissequogue Country Club in October; a wine
tasting at Tom and Ginny's house for our 2011
Man of the Year, Joe Tantillo of Coverages
Unlimited; and our eighth annual Beef-O-Rama
party.
We can do all this – and YOU can make a
huge difference in how quickly we do it.
CAF’s greatest source of support comes
from individuals like YOU. When you make a
commitment to CAF, you make a huge
difference in the lives of Gabriella (page 1),
Aaron (page 9), Diane (page 11) and
everyone else bravely facing the challenges
of thalassemia.
There are many ways you can make
a difference:
•
•
•
•
•
•
•
You can organize a Care Walk (page 3).
•
You can return the form below with a donation – and ask your friends to do the
same thing.
Contact: [email protected] or (631) 863-0532
Westchester-Rockland Chapter
Bike for a Cure
Arizona area friends of CAF can
help in the fight against thalassemia
by participating in the "Bike for a Cure"
You can learn more by visiting
www.firstgiving.com/2010azcaf or by
You can help with the “A Cure Is In Sight” campaign (page 2).
You can join our Cigar Smoker committee (page 4).
You can get involved with our chapters (page 14).
You can start your own fund raiser for CAF (page 1).
It can be as big as a golf outing or dinner dance or as small as a tag sale.
That one person can be you.
Thank you.
The Cooley’s Anemia Foundation
Want to learn
more about
how you
can help?
as part of the Tour de Tempe
on October 24, 2010.
You can participate in the NJ Elks Miracle Plunge (page 5).
Cigar Smoker honoree Louis D’Agostino (page 4) says, “There was no way I could
sit back and NOT get involved.” He knew one person could make a difference.
The oddsmakers were right: those who attended
the Westchester/ Rockland chapter's "Night at
the Races" on March 6 had a wonderful time.
This annual event is the way to experience
thoroughbred horse racing the way it was meant
to be: competitive, exciting, fast and fun...and all
within the comfort of the elegant V.I.P. Country
Club in New Rochelle, NY.
Information: [email protected] or
(914) 232-1808.
You can start a personal fundraising page on Firstgiving.com (page 9).
Contact
I WANT TO MAKE A DIFFERENCE
by making a tax-deductible contribution of
____ $35 ____ $55 ____ $100 ____ $250 ____ $500 ____ $1000
Other $ ______
Name
Address
City /State /Zip
email
Alyssa Youngerman
Please make all checks payable to the Cooley's Anemia Foundation.
[email protected]
or (212) 279-8090.
Mastercard ____ Visa _____ AmEx. _____
Card# ____________________________________________ exp. ________
contacting Antoni Foe at [email protected].
Mail to: Cooley's Anemia Foundation, 330 Seventh Avenue, #900 New York, NY 10001
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Cooley’s Anemia Foundation
All contributions are tax-deductible.
Cooley’s Anemia Foundation
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