February 2006 Connection

International Fibrodysplasia Ossificans Progressiva Association, Inc. (IFOPA)
Jeannie Peeper
PRESIDENT
I am an adult with FOP. I
graduated from the
University of Central
Florida in 1985 with a
BA in Social Work. I met
Dr. Michael Zasloff at the
National Institutes of
Health and learned that
he had other patients with FOP. After I
contacted some of the patients it gave me
the incentive to start the International
F.O.P. Association, Inc. in 1988 as a pen
pal group and to raise funding for FOP
research. I finally met someone with FOP
for the first time at age thirty-one. The first
FOP Connection newsletter was published
in January 1989 and was funded by my
Social Security check. It has now grown
into a 20-page publication. In June 2005,
on the IFOPA's seventeenth anniversary, I
retired from my leadership role and my
involvement in the day-to-day activities of
the organization. I was honored to serve
on the Board of Directors for seventeen
and a half years, retiring in December
2005. I will continue to serve as President,
and as a spokesperson and consultant. I
love the work that I have done and the
many wonderful people that I have met
have richly blessed my life. Together our
dream and hope will always be to find a
treatment and a cure for FOP.
Amanda Cali
CHAIRMAN
I am a mother of a 15
year-old-son with FOP. I
have had the privilege of
working for the FOP
cause for 10 years. My
work has been focused
primarily on fundraising
for both the IFOPA and the Ian Cali Fund,
both of which help support FOP research
at the University of Pennsylvania. I have a
B.A. in Events Management from Farleigh
Dickenson University. I enjoy helping plan
and run meetings, such as two IFOPA
organizational meetings, the 2000
Symposium, the Tri-state family meeting,
an FOP adult meeting, an FOP Meeting
Meet
the
2006
IFOPA
Officers
and
Board
of
Directors
held in Brazil for FOP families and, most
recently, the FOP mother's retreats.
Professionally, I have been an entrepreneur and event organizer and I've been
involved with strategic and organizational
planning for both small and large businesses. I hope to remain on the Board of
Directors and continue working to find
additional sources of funding for the
IFOPA so it can operate, fund FOP medical research and provide quality services
to its membership.
More Board of Directors Members
Pages 8-9
Meet the IFOPA Committees
Pages 10-11
Vol. 18, NO. 6 - February 2006
Megan Pheif,
VICE-CHAIRMAN
I am a native
Californian and my
husband John and I
have lived in Mill
Valley for the last 12
years. We have two
children, Hayden and
Elsa Lilli. Hayden was
diagnosed with FOP three years ago,
when he was two and a half. After our first
meeting with Dr. Kaplan, we decided to
start the annual Hayden's Hope Benefit for
FOP Research. This past November, we
held our third event. When not volunteering with the IFOPA or Hayden's fundraiser,
I work as a sales representative for architectural and interior finish products. In my
free time, I love to run, ski, mountain bike
and do yoga. I look forward to working
with the Board in my new capacity and
helping the IFOPA accomplish its many
goals in 2006.
Jeri R. Licht
SECRETARY
My 11 year-old-son,
Daniel, was diagnosed
with FOP on his third
birthday. Once that
happened, my life as a
negligence and malpractice attorney
changed and I realized the best way to help Daniel was to
help everyone with FOP by volunteering
for the IFOPA and fundraising. In 1998, I
was elected to the Board of Directors, and
since then I’ve worked with many wonderful people on a variety of projects. I’ve
chaired the Membership and Fundraising
Committees, been part of the three-person
Executive Committee that makes the
everyday decisions of the IFOPA, and
have been the IFOPA Secretary. I hope to
concentrate on supporting the various programs and goals of the organization,
including expanding our political clout,
assisting grant applications, improving
FOP awareness, and finding the multigenerational families that the laboratory
needs.
Page 1
M O V I N G F
G E T T I N G I
O R W A R D,
N V O L V E D
T
International FOP Association (IFOPA)
P.O. Box 196217
Winter Springs, FL 32719-6217
Phone 407-365-4194
Fax 407-365-3213
E-mail: [email protected]
Web Site: www.ifopa.org
The International Fibrodysplasia
Ossificans Progressiva Association (IFOPA)
is a 501(c)(3) charitable organization whose
mission is Instilling HOPE through
Research, Education and Support while
Searching for a CURE for FOP.
The IFOPA was founded by Jeannie
Peeper in 1988 and the FOP Connection is
its quarterly publication. To help those with
FOP and their families, we print information
and ideas from our readers on methods of
management and care for FOP and its consequences. As an organization, however, we do
not support or endorse any particular treatment or therapy. We urge everyone to always
contact his or her physician for final
approval of any treatment choice.
Open invitation to our readers - The
Connection always seeks to improve the
content and quality of our newsletter. We
encourage our readers to provide us with
feedback and comments on the newsletter as
well as suggestions for future issues. We
also invite anyone interested in providing
material such as story ideas, articles, poems
and artwork to the editor. Anyone interested
in contributing to the Connection is invited
to contact Eyal Goldshmid at
[email protected].
Editor: Eyal Goldshmid
Contributors: Gabrielle Apigo,
Anthony Barbera, Nick Bogard, Don Brister,
Amanda Cali, Linda Daugherty, Dr. Patricia
Delai, Eyal Goldshmid, The Gopshes
Family, Marilyn Hair, Melissa Helmick,
Carli Henrotay, Lori Henrotay, Dr. Joseph A.
Kitterman, Jeri R. Licht, Jeannie Peeper,
Megan Pheif, Holly M. Pullano, Sara Olson,
Gary Whyte.
Page 2
he last seven months have
been an adventure for me
as Chairman. I have had
the pleasure to work with an impressive group of volunteers, as well as
your elected Board of Directors and the
devoted IFOPA office staff.
With this New Year started, I
rejoice in seeing the many faces that
make up our community -- as well as
the support the IFOPA provides its
members throughout the year. Our
community is made up of families, contributors, researchers and friends alike
from all over the world. So whether you are raising funds, making
a donation, working on a committee, offering advice on
FOPonline or submitting an article for publication, WE are
demonstrating to the world and ourselves that we are part of a
unique family that helps one another and plays an important role
in finding the treatment and cure for FOP.
The FOP community is growing at an alarming rate internationally -- proof that our efforts to reach out as an organization
are working. Regardless of where our members may live, we will
be working hard in 2006 to shorten the distance between us.
As we forge into this exciting year, I challenge everyone to
get involved with one or two of the exciting projects that we are
working on, and I encourage you to start saving and raising
funds so that you can attend the Fourth International FOP
Symposium, which will be held in the autumn of 2007.
Please join in, make an effort to get involved and extend a
hand to one another.
-- Amanda Cali
Chairman of the Board
IFOPA Board of Directors
TA B L E
OF
Meet the 2006 IFOPA Board . . . . . .1,8,9
Chairman's Letter . . . . . . . . . . 2
Misdiagnosis Study . . . . . . . . . . . . 3
Dr. Delai visits FOP Lab . . . . . . .4
FOPBrasil's first anniversary . . . . . 5
Focus on Fundraising . . . . . . . . . 6,7
Book Recommendations . . . . . . . . 7
Pageant Winner with FOP Platform . . . 9
Whyte Continues Washington Plea . . . 9
2006 IFOPA Committees . . . . . . . . 10,11
Ralph the Dog . . . . . . . . . . . . . . . . . . . 12
CONTENTS
Time Out for OT . . . . . . . . . . . . . . . . . .13
Words of Inspiration . . . . . . . . . . . . . 13
Announcements . . . . . . . . . . . . . . . . .14
Meet the Gopshes Family . . . . . . . . . . 15
Birthdays . . . . . . . . . . . . . . . . . . . . . . 16
New Members . . . . . . . . . . . . . . . . . . 17
Member Changes . . . . . . . . . . . . . . . 17
Condolences . . . . . . . . . . . . . . . . . . . 17
Poem for Mary Kay Weber . . . . . . . . . 17
Contributors . . . . . . . . . . . . . . . . . . . 18,19
Highlighting Our Stars . . . . . . . . . . . . 20
Study Shows That Errors in
Diagnosis and Treatment are
Very Common in FOP
By Joseph A. Kitterman, M.D.
I
t is likely that most readers of the
FOP Connection will not be surprised by the findings in a report in
the November 2005 issue of the journal,
Pediatrics, that documents remarkably
high rates of diagnostic and therapeutic
errors in individuals with FOP. The article,
"Iatrogenic Harm Caused by Diagnostic
Errors in Fibrodysplasia Ossificans
Progressiva," (Pediatrics 2005; 116:e654e661) describes the results of a survey of
members of the International FOP
Association (IFOPA).
A questionnaire was sent to all
269 members of the IFOPA in the fall of
2002, inquiring about their experiences
with regard to accuracy of diagnosis, diagnostic and therapeutic interventions, age
of onset of symptoms of FOP, and duration of time from onset of symptoms to the
correct diagnosis of FOP. The questionnaire was also posted on the IFOPA website in English, French and Spanish. There
were 138 responses from 25 countries,
including 64 from 27 states in the United
States and 74 from 24 other countries.
The results show that 87 percent
of the 139 individuals who responded
reported they were initially given incorrect
diagnoses. This astonishing rate of diagnostic errors is much higher than has been
reported for other diseases and has been
associated with a high frequency of inappropriate diagnostic and therapeutic interventions, which have led to permanent
complications in almost half of those who
replied. These complications were almost
always described as a further limitation of
motion. The more common incorrect diagnoses included cancer and fibromatosis
(including aggressive fibromatosis and
desmoid tumors).
M O R E I N F O R M AT I O N
Anyone wishing to receive an
electronic copy of Dr. Kitterman’s
article in Pediatrics can contact
Dr. Kitterman directly via e-mail at
[email protected] or contact
the IFOPA office at 407-365-4194
or [email protected] or visit the
following URL on the IFOPA website:
http://ifopa.org/medarticles.html
In all, 47 different incorrect diagnoses were given to patients. The median
age of onset of symptoms of FOP was 4.1
years, with a range from birth to 17 years.
The average delay from onset of symptoms to correct diagnosis was 4.4 years,
with a range of less than one month to 49
years.
Diagnostic interventions were
performed in 98 percent of the patients.
Biopsies were performed in 67percent of
the patients, leading to permanent complications in 23 percent. Surgical procedures
were performed in 48 patients and, of
these, 60 percent suffered permanent
complications.
Because FOP can be diagnosed
accurately from the clinical findings of the
combination of the typical malformations of
the great toes (short great toe deviated
towards the second toe) and rapidly growing tumors (usually on the head, neck or
back), all invasive diagnostic procedures
and therapeutic interventions are inappropriate for those with FOP. There were no
significant differences in the rates of diagnostic errors or inappropriate medical
interventions between patients in the
United States and those in other countries.
In an effort to understand the
causes for the very high rate of diagnostic
errors in FOP, the authors reviewed 184
medical textbooks of relevant specialties
(including pediatrics, orthopaedics, internal
medicine, oncology, and podiatry) published in the past 20 years. Only 27 percent of the textbooks even mentioned
FOP; 23 percent described the clinical features of FOP, and eight percent cautioned
that trauma (including medical procedures)
could accelerate
the process of
heterotopic
bone formation
in FOP.
It is
likely that the
paucity of information about
FOP in medical
textbooks is a
contributing factor to the relaDr. Joseph A. Kitterman.
tive lack of
knowledge about FOP among physicians.
The authors of this study were
Joseph A. Kitterman, M.D., of the
University of California San Francisco,
Sharon Kantanie, M.A.T., patient-member
of the IFOPA, David M. Rocke, Ph.D., of
the University of California Davis, and
Frederick S. Kaplan, M.D., of the
University of Pennsylvania.
The authors' aim in publishing
this report is to increase awareness of
FOP among physicians throughout the
world, and through this the authors hope
to generate an increased rate of early and
accurate diagnosis of FOP and a marked
decrease in complications from inappropriate diagnostic and therapeutic interventions. Pediatrics, with a worldwide circulation of 150,000, has the largest readership
of any pediatric journal.
All of the authors have close
associations with FOP. Dr. Kitterman is the
step-grandfather of FOP-er Matt Horick,
who provided technical assistance for the
study; Ms. Kantanie has FOP; Dr. Rocke
is the father of FOP-er Miriam Rocke; and
Dr. Kaplan is well known to everyone in
the FOP community for his tireless
research into the cause of FOP and for his
devotion to all those with FOP.
Dr. Kitterman’s step-grandson, Matt Horick,
smiles at his sister, Danielle.
Page 3
A
VISIT THAT CHANGES EVERYTHING
by Patricia Delai, M.D.
S
ince the year 2000, when I saw the Lab and all the machines and
it always happens with FOP, it was as if I
attended the Symposium, I microscopes that work everyday there to
knew each one of those important wardreamed of visiting the
find answers for us, and at the end of the
riors a long time ago. Those were the
FOP Lab. I wanted to see where things
afternoon I saw the most beautiful sunset
faces of old friends.
were happening, where the main war
I ever saw in my life.
In my presentation, I decided to
against FOP was taking place. I wanted
But the best and most important
show only pictures. Pictures of each
to meet the warriors and their powerful
thing about my visit to the lab was about
region of Brazil, what places and people
weapons.
to come.
looked like. It was very important for me
In October 2005, this dream
The next morning, I would have
to show that Brazil is not a jungle with
finally became a reality and I was there
the important mission of meeting the Lab
wild animals or Indians, and not a place
again, in Philadelphia (where I left my
warriors, showing them the faces of my
where only poverty exists. Each region
heart in 2000).
country and telling them our reality and
was shown with its good and bad things,
When I saw the Philadelphia
what FOP looks like in Brazil. I would
and then each FOP patient was shown.
skyline again, tears came to my eyes. So
meet people that may have heard about
Faces and their stories, how things hapmuch has changed since the last
pened and how they are happentime I saw those buildings.
ing now. Our warriors from the
Unbelievable things, like having
Lab may have never seen so
a Latin American meeting and
many pictures of the people they
then an FOP Association in
are working for.
Brazil, and now I was coming
At the end of that presback to that beautiful city with
entation, I finally realized the real
different questions and thoughts
meaning of that Lab and why I
and with the very special miswas so anxious to be there. It
sion of telling the Lab warriors
was not the fancy and complicathow FOP was in Brazil.
ed equipment that was making
I could not wait to see
the difference in the future of
my special friend Dr. Kaplan,
FOP and to the final goal of findwho always helped me so much
ing a treatment or a cure. Those
during the past years and who
eyes, those faces were the differbecame such a close and dear
ence. They were the ones, workfriend.
ing everyday behind the scenes,
Dr. Kaplan took my oldthat were the real heart of that
est son Riccardo and me for a
Lab.
long walk through the University
Dear friends, this article
of Pennsylvania. For those who
was not written just to tell you
have never been there, I would
that I've been to the FOP Lab
like to describe it a little. The
and
that I enjoyed being there. It
TOP PHOTO: Dr. Delai (center) sits with the “warriors” in the
University of Pennsylvania looks FOP Lab at the University of Pennsylvania. MIDDLE: The
is a tribute to each one of the
like a small and beautiful city,
warriors I met there. People that
“faces” of Dr. Delai’s presentation to the Lab.
where the old and the new are
are working hard to find answers
mixed in a beautiful way. Young people
me, that may have spoken to me on the
and that must know that our prayers go to
everywhere, wonderful buildings. You can
phone, or that may have seen my picture
them every night, not because they are
smell history, feel the knowledge and scisomewhere. But as an old statement
helping us, but because they care.
ence in the air, and at the same time see
says: "You will never have a second
This was a visit that I wish you
little squirrels running between the
chance to give someone a first good
could all take. It changed forever the way
autumn-colored leaves that lay on the
impression."
I see this war against FOP. It is not a matground. It is a magical mix of the compliI was finally at the Lab, and with
ter of weapons…it is about the great warcated and the simple things that nature
a presentation to give. One by one, the
riors that we have and to whom I am perand life can give to us.
faces appeared and the names finally had sonally grateful, from the bottom of my
I visited Dr. Kaplan's office and
a face connected to them. Amazingly, as
heart.
Page 4
FOPBrasil
marks its first
anniversary
by Patricia Delai, M.D.
T
in Brazil that another family like this can
be found in our country if we go for it and
don't find it too late.
So we decided to raise money to
be on TV, on the radio and in the press.
We hired a public relations person that
sent information about FOP to the media.
You all know that it is hard work
to talk about FOP. First, people get interested because the disease is different and
they have never heard about it. But then,
when they know that it is rare, the interest
decreases.
But even so, we had our glorious
moments in 2005.
A story about a girl with FOP was
published in our most
important magazine Veja. With the help of
the world community,
Veja wrote again
about FOP in its next
issue, this time praising the friendship and
power we have as a
world community and
explaining better
what FOP is.
We went to
three different TV
shows (but this time
shows that only
appear in São Paulo,
not all Brazil.) We
appeared in several
newspapers and
Toquinho, one of the vocalists for the classic Brazilian song radio shows.
"The Girl from Ipanema,” dons an IFOPA Awareness
Celebrities
heard about FOP and
Bracelet.
showed us their supbrothers around the world. After all, we
port, like the singer Toquinho (one of the
can't forget that we are all part of one big
singers of the famous Brazilian song "The
family.
Girl from Ipanema") and Luciana Gimenez
One year ago, when we started,
(model and close friend of the singer Mick
we all agreed that our main goal would be
Jagger).
finding multigenerational families in Brazil.
But we did not stop only with
The experience of being in a national TV
this.
show had been great. You may remember
We made folders with basic inforthat a TV show in 2004 brought us five
mation about FOP. Simple posters, with
new FOP patients, including one from a
pictures of the toes and extra bones with
multigenerational family of nine people
the words "FOP, YOU NEED TO KNOW
(unfortunately with only three people alive, IT" and the IFOPA website, were sent to
only one with FOP). It is clear for us here
hospitals and public places where people
he first anniversary is
something our family never
forgets.
The same thing happens to all of
us now when we look back and remember
when the Brazilian FOP Association was
only a dream, when it became an embryo
and finally when it was born and we could
see its face, give it a name and start
working on it and loving it.
And just as parents do, we registered every single moment of this first
year. The first smile, the first time it cried
and the first steps. Unforgettable
moments for us as proud parents that we
now want to share with all of you, our
could see them and -- even for curiosity
stops -- later remember to visit the website.
By the end of the year, some
generous donations of food, clothes and
toys made it possible for us to make a little Christmas party and put a smile on the
faces of the ones that had nothing to eat
or to play with.
Looking back, we can see that
we did a lot last year.
I remember one day at the office,
when one of my patients saw the picture
of the First Latin American FOP Meeting.
He looked at it and asked me: "FOP? Are
you working with FOP?"
I was astonished, and of course I
asked him what HE knew about FOP. It
was a surprise when he answered my
question without mistakes, and I thought
to myself that at least part of our mission
was being accomplished.
Luciana Gimenez, Brazilian supermodel and friend of Mick Jagger of the
Rolling Stones, shows her support for
FOPBrasil.
Looking ahead, we can see that
there is still a lot to be done. Brazil is too
big and we must go on talking about FOP
in the media so that we can reach distant
places where patients and multigenerational families might be.
One of the best things about
Brazilian people is that we are all "hard
heads." This means that no matter how
difficult things can be, no matter how far
we need to go to achieve our goals, we
never give up.
We will surely go on in 2006, and
we count on the prayers and the beautiful
support of the international community to
shine even more than we did in 2005.
Page 5
Focus on
Fundraising
Spencer Man
Memorial Drawing
exceeds expectations
By Eyal Goldshmid
Stephanie Euliano from Allstate Insurance in
Oviedo, FL picks the winners.
T
he Spencer Man Memorial Benefit Drawing, held on November 11, 2005 at the
IFOPA office in Winter Springs, FL, exceeded expectations on every front, says
Linda Daugherty, Executive Director of the IFOPA.
The event, which initially aimed at producing 1,500 eligible entries, garnered more than
2,900, Daugherty said. Ticket entries for the event were sold through the IFOPA office, on the
IFOPA website (www.ifopa.org) and by members of the IFOPA community. Tickets were sold
from Sept. 4 to Nov. 4. Winners' names were selected by Stephanie Euliano from Allstate
Insurance in Oviedo, FL at 11 a.m. on November 11.
"Thank you to everyone who participated. You made this an extremely successful
fundraiser," Daugherty said.
Winners (and their respective prizes) are as follows: Bitzi Davis of St. Louis, Mo. (IBM
ThinkPad laptop); Jane Helmick of Fort Myer, Va. (17" LCD flat screen TV); Brianne Lachance of
Grand Bend, Canada (green iPod mini with iTunes gift certificate); Ashley Keeney of Peachtree,
Ga. (silver iPod mini with iTunes gift certificate); Kristen Long of Carrollton, Ohio (Rave MP Arc 2.5
MP3 player with headphones); Ardo Holmgrain of Rock Island, Ill. (Sirius Satellite Radio Receiver)
and Charles Harwell of Ashland, Ohio ($100 American Express Gift Card).
In addition to the money raised through the event, Mike Man, head of the Spencer
Barnett Man Foundation of Oklahoma City, matched the first $5,000 raised. Man, father of FOP-er
Spencer, has been an active FOP advocate for more than a decade.
"We want to try to help fund the IFOPA research at PENN on a quarterly level," said
Man. "We want to help other people who are going through the same things. We don't want to
step aside."
.... short takes
Sarah Steele's Pencil
Holder Fundraiser at
College Student Union
Car wash benefits
Wayne Gopshes, IFOPA
I
n June 2005, the Gopshes
family held a "Car Wash for a
Cure" fundraiser at a church
in their Maryland neighborhood. During
the event, family members and friends
joined forces to wash an assortment of
cars and trucks and sell baked goods
and IFOPA bracelets.
According to Traci Gopshes, the
car wash service itself was free, but
those who took advantage of it also
made donations.
By Marilyn Hair
M
y daughter Sarah Steele
has been making pencil
holders from plastic canvas
and plastic "s'cetti" (or string) for the past 10
years. She always has a pencil holder "in
process." She works on them when she rides
in the car and when she watches television. It
takes Sarah 10 hours to make one pencil holder, and she finishes about one per week.
Even with all the time it takes, Sarah
makes her pencil holders faster than she can
sell them. This fall, she had a box full of completed pencil holders, more than six months'
worth, and she decided that it would be a good
idea to sell them on the campus of Seattle
Pacific University, where she attends college.
There is a busy hallway in her college's student union building, beside the Coffee
Bar, where vendors set up tables for the day
and, for a small fee, sell their crafts. Sarah
decided to spend a day selling her pencil holders and green FOP Awareness Bracelets to
benefit the IFOPA. She advertised the sale with
posters and through emails to classmates and
teachers. For her stand, she crafted a display
about the IFOPA, complete with brochures,
Page 6
Wadd garage sales successful
Sarah Steele and her pencil holders.
green bracelets and pencil holders.
Sarah's fundraiser was held from 9
a.m. to 2 p.m. on October 20, 2005, during
which she greeted a steady stream of visitors
and customers. Some bought pencil holders;
others bought green bracelets, made donations or took home IFOPA brochures.
Sarah had a great time meeting new
people from the university, talking to friends,
raising awareness for FOP and raising money
for the IFOPA. She plans to do a Pencil Holder
Fundraiser for the IFOPA again next year.
T
he Wadd family of
Gloversville, N.Y. held
three separate garage
sales during the summer of 2005, each
of which proved to be a fundraising success. For the sales, the Wadds, including
Matt, Sabrina, Dave and Gloria, along
with their friends Dolores and Jim Rizzo,
Mary and John Nelli, Paul and Carol
Bowers, Nancy and Rich Jayne and
Sarah Maiello, donated a number of
items and held a gift-basket drawing.
"Even though it was hard work,"
said the Wadds, "we all had a great time
together and helped raised some money
for research."
Focus on
Fundraising
$357,544.60
Thanks to everyone who contributed to the
I F O PA i n 2 0 0 5 . We c o u l d n ’ t h a v e d o n e i t w i t h o u t
y o u . L e t ’s m a k e 2 0 0 6 t h e b e s t y e a r y e t !
This is our 2005 Fundraiser Thermometer. It reflects funds
raised for the IFOPA from events and programs that our members
sponsor. This does not reflect funds from donations or dues. Watch
the thermometer rise throughout the year!
In the 4th quarter of 2005 (October 1 - December 31, 2005)
our fundraisers have raised $218,773.27. The IFOPA would like to
extend a special thank you to the many individuals who supported and
were involved in our recent fundraising events. We appreciate the following recent fundraisers for attributing to the current amount raised:
4th Quarter Fundraisers
- Coins for a Cure
- FOP Awareness Bracelets
- Helmick craft fair cards in honor of Ian Cali
- Sarah Steele's Pencil Holder Fundraiser at College Student Union
- Special Occasion Scrolls
- Spencer Man Memorial Benefit Drawing
- The 3rd Annual Hayden's Hope Benefit in honor of Hayden Pheif
- The 3rd Find-A-Cure Fundraiser in honor of Holly Pullano
- Wadd Garage Sales in Honor of Matthew Wadd
IFOPA Book
Recommendations
taken from FOPonline postings
How to STOP Being Vampire Bait: Your
Personal Stress Annihilation Program
BY DR. RICHARD BRUNO
In How to STOP Being Vampire Bait: Your Personal
Stress Annihilation Program, stress expert Dr. Richard Bruno
teaches you not only how to manage stress but also how to eliminate it from your life. Through clear explanations, commonsense examples and simple homework assignments, this selftaught, four-week program provides readers with the opportunity
to identify the things in their lives they can change -- or avoid -to reduce stress. The book was written specifically for those with
disabilities or chronic illness but its lessons can be adapted to
anyone.
"The book aids in teaching you to listen to your body,"
Dr. Bruno says. "We get so many messages from our bodies, but
most [of us] have been taught to ignore those messages. We
can no longer ignore ourselves and stay healthy. But changing a
lifetime of behaviors is difficult, and the book can be helpful in
making the changes that can make a difference in your life!"
Bruno is chairperson of the International Post-Polio
Task Force and director of The Post-Polio Institute at Englewood
(NJ) Hospital and Medical Center.
Contact Nancy Frick at [email protected] for more
information.
By The People: A History of Americans as Volunteers
SUSAN J. ELLIS AND KATHERINE H. CAMPBELL
BY
Volunteers are vital to the work of any nonprofit organization. In By The People: A History
of Americans as Volunteers, authors Ellis and
Campbell provide a lively examination of how
volunteers have pioneered community action
through three centuries of American life and
helped develop the country's neighborhoods,
government, institutions and professions. The
book also explores the way volunteers have
nurtured positive social change and how those
efforts are shaping the new century. (Perhaps
after reading it, you will be inspired to do the same for the IFOPA
or other organization close to your heart. The book is available at
Amazon.com.)
"It [the book] makes me pause to think that how we
motivate and engage volunteers will truly impact the social fabric
of our country," said Kate Forbes, National Chair of Volunteers
for the American Red Cross.
Page 7
MEET
THE
2006 IFOPA OFFICERS AND BOARD MEMBERS
CONTINUED
Anthony (Tony)
Barbera
TREASURER
lies.
Nick Bogard
Picture
not
available
My name is Anthony
Barbera and I reside in
Mountainside, NJ with
my wife Joanne and our
four children. I have
been a partner in the
Murray Hill, NJ accounting firm of Barbera
& Barbera CPA's with my brother Arthur
for 15 years. I am a CPA and a CFP and
specialize in construction contractors and
estate planning. I enjoy coaching youth
baseball, fencing and soccer. I also teach
karate in Scotch Plains, NJ. I am one of
the founding members of the
Mountainside Police Athletic League and
currently serve as their Treasurer. I
became aware of FOP when Whitney
Weldon was diagnosed. I then became
involved with the IFOPA due to my close
friend, Gary Whyte, whom I help with all of
his fundraisers. I hope to see a cure for
FOP in my lifetime and will do all I can to
help that happen.
Holly M. Pullano
AT-LARGE MEMBER
I am a 25-year-old
adult with FOP. I was
diagnosed at age 16,
and although at first I
was reluctant to get
involved with the
IFOPA community, I
now have embraced it
as my life’s purpose. I am an active FOP
advocate and am dedicated to fundraising,
increasing awareness and advancing
medical research. I will be receiving my
B.A. in Communications and Journalism,
with a minor in Sociology, in May 2006. I
plan to pursue my Master's after obtaining
a full-time position in the journalism arena.
My dedication to the IFOPA remains
strong, as I am active in fundraising and
making our cause known to the public,
particularly the media and political world.
As a member of the Board of Directors, I
am devoted to planning for the future of
the organization. I have met an incredible
network of people through my work with
the IFOPA, and I would like to continue to
build upon the relationships that I have
made in order to further our cause. I am
passionate about making a difference in
the lives of those with FOP and their famiPage 8
BOARD MEMBER
I am the father of Judson
Bogard, who was diagnosed with FOP in 1976
at age 3. He is now 29
years old and resides in
North Hollywood, CA. I
have been actively involved in the IFOPA
since 1989. I started a golf-outing
fundraiser, which has raised over
$200,000 for the IFOPA, and have been a
member of the IFOPA Board of Directors
since 1996, as well as Chairman of the
Finance Committee. I feel that the priorities for the IFOPA should be to push Dr.
Kaplan to increase the research effort and
increase programming to help young
adults with FOP learn about financial
issues and about day-to-day living issues.
Don Brister
BOARD MEMBER
My main goals as a
Board Member are to
assist those that have
this disease, educate the
public and find a cure. I
was born in Texas but
now reside in Meridian,
Idaho. I have two grown children and one
grandchild. Most of my career was spent
in the areas of marketing, public relations,
human resources and grant writing. I
became involved with the FOP community
in 1995, when I met the Snow family
(whose daughter, Stephanie, is diagnosed
with FOP). Through the efforts of the
Snow family and their community, more
than $1 million has been raised to find a
cure. I was part of the leadership team
that organized and carried out various
fundraisers. I have been a part-time radio
broadcaster since 1968 and it was my
pleasure to serve as the emcee of the
annual benefit auction and dinner for 10
years. It was in this role that I met Dr.
Kaplan, whom I consider to be one of the
greatest influences in my life. I believe
that I can utilize my public speaking ability
and grant writing skills and offer ideas for
fund raisers throughout the country.
More Board Members - Page 9
IFOPA Committees - Page 10
FROM PAGE
1
Marilyn Hair
BOARD MEMBER
I have served on the
Board of Directors for
more than 10 years, during which I have held
positions like Secretary,
Vice-President and Vice-Chairman. In
addition, I served as the Chair of the
Membership Committee and the LIFE
Committee ("Living Independently with
Full Equality"). I have written several articles about FOP and the IFOPA, which
have appeared in publications like the
FOP Connection, Exceptional Parent
Magazine, The Journal of Religion,
Disability and Health and Clinical Reviews
in Bone & Mineral Metabolism. My daughter, Sarah Steele, 21, has FOP, and
together we have led workshops at all
three FOP Symposia. My family and I also
appeared on several TV programs to talk
about FOP, including 20/20, Sally Jesse
Raphael, and the Discovery Health show
Medical Incredible. I hold a Masters of
Divinity from Yale Divinity School and am
an ordained minister in the United
Methodist Church. In the last two years, I
have returned to college part-time to learn
about science and am currently studying
Organic Chemistry. My husband Rick
Steele and I, and our children Sarah, Jonathan and Mollie, live in Redmond, WA.
Lori Henrotay
BOARD MEMBER
I reside in St. Louis,
Mo. with my husband
Pete and our 10-yearold daughter Carli. I
have been involved in
education and fundraising for many years. Carli was diagnosed
with FOP in September 2001. After that,
our fundraising efforts turned to supporting
FOP and the IFOPA. (Carli and I consider
ourselves a "skilled facilitator team," along
with our companion dog Ralph.) I worked
for IBM for 15 years and have 20 years of
financial services experience. For the past
five years, I have focused on marketing
but also have experience in sales, project
management, training and consulting. I
enjoy learning and currently teach liturgy
at St. Catherine Laboure Parish. I have
been involved in many organizations over
the years and I like to help people solve
problems, particularly computer-related.
MEET THE 2006 IFOPA OFFICERS AND
BOARD MEMBERS
C ONTINUED
FROM
PAGE 8
Sara Olsen
BOARD MEMBER
My nephew, Hayden
Pheif, was diagnosed
with FOP three years
ago. Since then, I
have been actively
involved with the
Hayden's Hope
fundraiser spearheaded by my sister
Megan Pheif. I am looking forward to
being more actively involved in the
IFOPA as a whole. I have more than 13
years of operational experience in a
series of industries, including real estate
development, interior design and high
technology. For the past four years, I
have focused on real estate development, most recently completing an $11
million conversion of a vacant hospital
building on Central Park North in
Manhattan. In 1999, I started
HauteDecor, a web-based portal for
Interior Designers and Architects, and
raised more than $12 million in venture
financing for the company. I spent seven
years in high technology, primarily with
Macromedia, where I was responsible for
a $35 million P&L -- more than 30 percent of the company's revenue. I hold a
BA from University of California,
Berkeley, and an MBA from Harvard
University.
Beauty Pageant Winner
has FOP as her Platform
I
n December 2005 I was awarded the title
of Miss Teen New Jersey Galaxy. I feel
honored to have the opportunity to represent my state. Along with this honor I feel a responsibility to take a stand for a cause which has touched
my heart: FOP.
My interest in FOP began two years ago, with
a high school research project. I live in Mountain-side,
NJ, a small town where everyone basically knows
everyone else. It is in my hometown where I had the
pleasure of meeting Gary Whyte, a soldier in the fight
against FOP. He unselfishly took the time to share
information and facts about this disease, and soon
enough FOP became more than a research project, it
was an adversary that I needed to help eliminate.
Undoubtedly, my goal as Miss Teen New
Jersey Galaxy will be to open doors and opportunities
and to share my commitment to FOP with others.
Together, I hope and pray that we will find the treatment and cure for FOP as quickly as possible. Let's
keep fighting until we win!
-- Gabrielle Apigo
“I never knew anyone who has FOP and wants to
give up. The others must know that FOP is not the
end of life, but a beginning for a new way of life -that shows how much strength, hope and love the
FOP Community has inside its heart.”
-- Patricia L. R. Delai, M.D.
President of FOPBrasil
Whyte Continues FOP Political Efforts
Editor's note: The following excerpt has been taken from an
email from Gary Whyte and is presented as a means to bring
readers up-to-date with the IFOPA's plea to Washington. The
content has been edited to fit the constraints and guidelines of
this publication.
On Dec. 15, 2005, I had the opportunity to be in the
company of Sen. Hillary Rodham Clinton and Sen. Jon Corzine;
Corzine will soon be the next Governor of New Jersey. As you
can imagine, it's not easy to get close to them, and if you can,
it's tough to say what you have to say in a short period of time.
Having delved into the political arena for FOP over the
past four years, I've noticed it's become a little easier to work
the room. If you recall, last summer my eight-year-old son
Jeffrey and I had an appointment to give Sen. Hillary Clinton's
New York office an FOP presentation. During the tour we
learned that the Senator's favorite color was yellow.
Knowing that, I purposely wore a yellow sports jacket
and used that angle as my opening line to the Senator, which
seemed to work well. It
was then that I reached
into my pocket and took
out a green FOP wristband and proceeded to
tell the Senator about
our encounter at the
Capitol in July, then of
our next encounter at
her New York office, all
in an effort to keep her
posted and informed
about FOP.
She placed the
green wrist-band on her
arm, posed for a picture and then off I went to make my presence known to Sen. Jon Corzine. The rest you can figure out.
So all I can say from this side is that we need to keep
the pressure on our elected officials and continue to make our
presence known.
-- Gary Whyte
Page 9
The 2006
I F O PA C o m m i t t e e s
W o r k i n g f o r Yo u
The IFOPA relies on the generosity of its volunteers, who
donate many hours each year
by assisting with fundraisers,
staffing our Committees and
more. Without them, our
efforts would not be possible.
On the next page, you’ll find
brief descriptions of what
each Committee does to
serve you better. Also included are the Committee Chairs,
Members and SubCommittees.
Enrollment in committee and
Sub-committee membership
is open to anyone. We hope
you join one or more of them.
No matter the size of the project, it all adds up in the end
and your help will always be
greatly appreciated.
If you'd like to participate in
one or more of the following
groups, or would like more
information about them,
please contact Linda
Daugherty, Executive Director,
at 407-365-4194 or by email at
[email protected].
-- Information compiled by Amanda Cali, Linda Daugherty, Eyal Goldshmid, Jeri Licht and Holly Pullano
Page 10
FUND DEVELOPMENT
COMMITTEE (FDC)
L . I . F. E .
COMMITTEE
Chair: Executive Director
Chair: Marilyn Hair
Committee Members: Chairman, Vice
Chairman and members of the Board on
an as-project-basis
Committee members: Margy Holzer,
Jelena Milosevic, Tina Smith, Shay
Williams, Susan Williams
Purpose: The Fund Development
Committee secures sufficient funding
over the long-term to ensure operating
expenses, existing programs and new
projects are adequately funded.
Purpose: The L.I.F.E. Committee's mission is to help people who have FOP live
full, satisfying and independent lives. To
accomplish this, the Committee provides
information about disability rights laws,
public schools, special education, postsecondary education, adaptive equipment, assistive technology, government
entitlements, advocacy and more. Using
money designated for this purpose, the
LIFE Committee also sponsors "Quality
of LIFE Awards” to support and improve
the independence and quality of life
experienced by qualified applicants, usually by helping with the purchase of
mobility devices, training, etc.
Sub-Committees:
(Volunteers needed for all Sub-Committees)
- Long Term Development Projects
Sub-Committee
Chair: Executive Director
Purpose: Identify new opportunities to
secure funding through a variety of
ways.
- IFOPA Special Events Sub-Committee
Chair: Executive Director
Assistant Chair: Vice Chairman
Purpose: Develop and run one or more
IFOPA fundraisers per year.
- Grants Sub-Committee
Chair: Don Brister
Purpose: Identifiy areas for potential
funding and explore grant possibilities.
Chair: To be determined (seeking volunteer)
P U B L I C R E L AT I O N S
COMMITTEE
Committee Members: To be determined
(seeking volunteers)
Purpose: The Public Relations
Committee is responsible for developing
and implementing a plan to handle
branding, media coverage and film
development as it relates to the ongoing
needs of the Association, the FOP community, and the general public.
FINANCE
COMMITTEE
Chair: Nick Bogard
Committee Members: Peter Licht and
Tony Barbera
Purpose: The Finance Committee monitors the financial affairs of the
Association and the performance of the
investment managers and reports to the
Board of Directors quarterly.
N O M I N AT I N G A N D B O A R D
DEVELOPMENT COMMITTEE
Chair in charge of Board Nomination
Process: Nancy Sando
Chair in charge of Board
Development: To be determined (seeking volunteer)
Committee Members: To be determined
(seeking volunteers)
Purpose: This committee identifies, cultivates and recruits Board Members of
outstanding potential and makes recommendations to the Board of Directors. It
also manages the application, nomination, voting and final approval process
for Board Members and officers.
P U B L I C AT I O N S
COMMITTEE
Chair: Holly Pullano
Editor: Eyal Goldshmid
Committee Members: Tina Smith,
Theresa Caruso, Elizabeth LaRue,
Tonya Barnes and the volunteers writers
throughout the FOP community
Purpose: The Publications Committee is
responsible for producing the current
publications, FOP Connection and
Milestones, ensuring the publications are
kept fresh and representative of the
entire FOP community, and manages all
other printed or publicly available materials that need periodic updating or maintenance, including the IFOPA website.
SYMPOSIUM
COMMITTEE
Chairs: Chairman, Executive Director
and Lori Henrotay
Purpose: The Symposium Committee
will investigate, plan, hire appropriate
staff, and oversee the running of the
Fourth International FOP Symposium in
2007. In doing so, it will work to establish
the budget for the Symposium (with help
from the Finance and Funding SubCommittee), design the Symposium format, entertainment and programs, and
coordinate all Symposium SubCommittee work.
Sub-Committees:
(Volunteers needed for all Sub-Committees)
- Family Workshops Sub-Committee
Chair: Amanda Cali
Assistant Chair: Holly Pullano
Purpose: Design, staff and oversee
family workshops at Symposium.
- Finance and Funding Sub-Committee
Chair: Lori Henrotay
Assistant Chair: Executive Director
Purpose: Responsible for the planning
and development of the necessary funding sources to support the programs at
the Symposium.
- Resource Fair Sub-Committee
Chair: Jeri Licht
Purpose: Design, establish budget for,
organize, staff and run the Symposium
Resource Fair.
- Medical Clinic Support Sub-Committee
Chairs: Dr. Fred Kaplan, Dr. David Glaser
Purpose: Design, staff and run
Symposium medical clinic.
- Children's Activity and Care Center
Sub-Committee
Chair: Sue Salberg
Purpose: Design, establish budget for,
coordinate the hiring and supervision of
the children’s care professional services.
Sub-Committee
volunteers may
choose to work with
one or more
Sub-Committees
c o l l e c t i v e l y.
Page 11
Carli's Best Friend and
Helper, Ralph, Opens
Doors to Independence
by Carli & Lori Henrotay
I
magine having a constant companion who is able to
help you reach a light switch, pick up things when
you drop them, or even open a door. Then imagine
that this companion is a dog and this dog can do all this for you,
and more!
We applied for a service dog with Canine Companions
in February 2003. We were approved in July and two years later
(because of the number of people waiting for dogs), we were
invited to Team Training in May 2005.
Carli and Lori Henrotay, along with Ralph III, made up a
three-part team, called a Skilled Companion Team. During Team
Training, the trainers pair a participant and dog together according to many criteria, including how the participant handles the
dog and how the dog reacts to the participant. We were lucky to
be paired with Ralph, who is the perfect match for us.
Ralph turned two years old on June 15. He is a
Labrador-Golden Retriever mix. He looks like a big loveable lion.
He makes funny groan-like noises but doesn't like to bark. In
fact, the only command he does not respond to is "speak."
Having
Ralph is more than
having a "working"
dog. He is a constant
companion who
helps with physical
tasks, but equally if
not more important,
he provides an
unconditional bond
of companionship,
affection and love.
Ralph has brought
so much joy to our
lives.
During
Team Training, we
learned so much.
We now know how
to communicate with
Ralph, as well as
how to continue to
train and care for
him. We have a speL e ft t o r i g h t : L o r i , C a r l i a n d
cial place in our
R a l p h a t Te a m Tr a i n i n g .
hearts for all the volunteers and puppy
raisers. The puppy raisers care for and train the dogs until they
are about 14 months old when then go off to school for
advanced training. Carli wants to be puppy raiser someday.
During the graduation ceremony, Beth & Randy
Schroeder were proud to present Ralph to us. They are now
raising their tenth CCI dog!
The dogs know over 45 commands, with "hurry" being
Page 12
Ralph III.
the command used to toilet the dog. We were so proud to be
part of Canine Companion for Independence's 30th Anniversary.
The compassion, understanding and thoughtfulness extended
was beyond our wildest dreams. We are forever grateful. Team
Training was a series of wonderful experiences. What we
learned during those two weeks is truly amazing; what these
dogs bring to our lives is even more astounding. We had the joy
of making new friends, both human and canine, and learning
from them as well. It has been a journey of emotions including
anxiety, excitement, joy, love, frustration, success and more. We
look forward to continuing our journey and sharing our magnificent experiences with others.
In closing, we would like to share Carli's thoughts on a
TV theme song that expresses how we feel about our new
canine companion. The song is the theme song from the TV
show Full House. Not only is this Carli's favorite show, but the
words to the song accurately convey our feelings about Ralph.
(Ironically enough, the dog on Full House, "Comet," is a spitting
image of our own handsome "King Ralph" -- one of the nicknames we affectionately call him.)
So here goes …
What ever happened to predictability?
The milkman, the paperboy, evening TV.
Everywhere you look , everywhere you go, there's a heart,
There's a heart … a hand to hold onto,
Everywhere you look , everywhere you go,
There's a face of somebody who needs you.
Everywhere you look,
When you're lost out there and you're all alone,
A light is waiting to carry you home,
Everywhere you look.
Everywhere we look, Ralph is our hand to hold onto.
We are someone who needs him!
From the bottom of our hearts, we are grateful for
Ralph and this experience. We'd also like to thank the Licht family for paving the way with CCI in their understanding of FOP
and for sharing their experiences with us. They too have a hand
to hold on to with their companion dog, Copper.
Having a companion dog is more than having a helper
-- in fact, it's much more than we could have imagined. We are
so thankful for CCI, the puppy raisers, and the volunteers for
opening the doors to independence for us and so many others.
For more information about CCI, visit www.cci.org.
Time Out
for OT
By Melissa Helmick
Occupational
Therapist
H
ello again! This month
I am writing about
shoes and socks -- primarily those that stress comfort, flexibility of fabric and adaptability.
For inside your house, I suggest socks without skid patterns on
the bottom, suede moccasins or sock
slippers with no-skid bottoms.
On the flip side, you might
also consider getting a pair of water
shoes. Water shoes are very flexible,
made with light-weight stretchy material, and have a no-skid bottom. Since
they are so flexible, however, getting
them on might require some assistance.
If that weren't enough, some
of the water shoes I examined looked
like sneakers, which could be a plus
-- especially for those fashion conscious teenagers out there! Look for
pictures and selections at
www.sammonspreston.com.
While you're at www.sammonspreston.com, be sure to check
out the Silipos Arthritic/ Diabetic
socks as
well. These
socks have
gel inside,
which provides cushioning, support, protection and
comfort. The
Silipos Arthritic/
gel decreasDiabetic Socks.
es friction
and callus formations, and its seamless toe should eliminate pressure on
the toes. (Having said this, though,
it's unclear if these can be worn with
all types of shoes.)
Another option is the casual
sandal with a two-strap Velcro closure, available at www.clothingsolutions.com. The leather used in the
sandal is very flexible and has a
cushioned insole. It's item # PW348,
if you're interested.
For dealing with the occasionally unsafe winter surfaces of ice
and snow, check out the Yaktrax
Walker ($18.50 for a pair). The item
consists of high-strength abrasionresistant steel coils, which attach to
the bottom of your shoes or boots.
According to the catalog, they allow
for safe walking in snow and will "not
damage carpets or most floors." They
looked easy-to-use and lightweight.
You
can find
them at
www.amazon.com -just click on
"Apparel/
Shoes," type
in "Yaktrax
Walker" and
click search.
Or
Yaktrax Walker.
better yet, go
to the
Amazon website through the IFOPA
website and order! You can do so
through the following URL:
http:///www.ifopa.org/special.html.
Also on Amazon, check out
the Gel Metatarsal Pads (for foot/
bones/toes). These are perfect for
anyone needing relief from pressure
points.
Other shoe types you might
want to examine are Mary Jane
Chinese shoes, flat ballet shoes and
a small-heeled tap shoe (for the
ladies).
For men, I suggest the Brown
Shoe Men's Powell Street ($64.99).
They have a sneaker bottom but look
like a dress shoe (quite nice-looking,
if you ask me). They have a comfortable Dearform-closed toe ("terra
soles," it's called) and can be worn
both outside and inside. If that
weren't enough, they're machine
washable!
In addition, I recommend for
everyone to get an 18-inch plastic
shoe horn, elastic shoe laces (they'll
stop you from having to tie your
shoes every time you put them on),
Velcro closures instead of shoe laces,
and various insoles made of different
materials.
One last website to mention:
Adaptive Equipment for People with
Skeletal Dysplasias/Short
(www.ksginfo.org). This site focuses
on mainly dwarfism, I should add, but
it also provides plenty of useful information for anyone with special needs.
Best of all, it houses a helpful
resource list, which includes a link to
the www.sarasshoes.com/catalog. At
this site, you'll find an assortment of
high-quality (and, sadly, highly expensive) items that could come in handy.
Please email me at
[email protected] if you have a
question about shoes, especially if it
involves discussing an adaptation.
Using my Occupational Therapist's
"hat," I will be happy to brainstorm
with you!
Worr d s of
insp
p irr ation.....
"I can either be a person
with a disease ... or a
diseased person... I
choose the first."
-- Lori Mahler
***
"We spend January 1
walking through our lives,
room by room, drawing
up a list of work to be
done, cracks to be
patched. Maybe this year,
to balance the list, we
ought to walk through the
rooms of our lives, not
looking for flaws, but for
potential."
-- Ellen Goodman
Page 13
A
N N O U N C E M E N T S
E
A N D
V E N T S
2005 ANNUAL FUND
ONLINE ADVOCACY PAGE COMING SOON
The 2005 Annual Fund Campaign
was a great success, and we thank the
generosity of each person who contributed
from the bottom of our hearts.
But we’re still far from reaching
our goals. Our #1 aim at the IFOPA is to
fund FOP research -- including The Fourth
Interntional Symposium on FOP in 2007.
To do less would destroy the hope that
sustains everyone afflicted with FOP and those that love
them.
That is why we ask for your continued support.
Did you know that FOP families and friends across
the globe fund 77% of the total research bill (approximately
$1.8 million/year) at the University of Pennsylvania?
It is a huge challenge to achieve that level of funding
on an annual basis. But if we are to progress toward the goal
of a TREATMENT and CURE for FOP -- then it must be done!
So please know that any contribution you can find in
your heart and pocket to send -- whether it is $15, $25, $50
or more -- will help us move forward with all of the IFOPA's
projects.
To donate, or if you have any questions, please contact the IFOPA office through the following information. Also,
any IFOPA members who have not renewed their dues for
2006 can do so through the information below.
Advocacy means getting involved. That means calling, writing letters, sending emails and even visiting your
serving elected representatives in Washington, DC, or in your
state.
To facilitate the process for our members, the IFOPA
has decided to create a new section on its website
(www.ifopa.org) devoted entirely to FOP advocacy. On it,
you’ll find a slew of resources, like sample letters, writing tips,
advocacy suggestions, helpful links and more.
Look for it online in late-February or early March.
International FOP Association
P.O. Box 196217
Winter Springs, FL 32719-6217
Tel: 407-365-4195
E-mail: [email protected]
Or you can donate or pay dues online at:
http://ifopa.org/duesform.html
OTHER
ONLINE
FOP RESOURCES
A
s you may know, the
FOP community
extends across the
globe. So if you’d like to join either of
our international online newsgroups,
please e-mail the appropriate contact
person (listed below).
FOPBRASIL
A gathering place online for members to share their experiences in Portuguese. http://fopbrasil.com.br
Contact: Dr. Patricia Delai
E-mail: [email protected]
FOPLATINOAMERICA
A gathering place online for members to share their experiences in Spanish.
Contact: Moira Liljesthrom
E-mail: [email protected]
Note: The IFOPA does not oversee or moderate the
online groups listed.
CORRECTION
The November 2005 FOP
Connection mistakenly identified
Madame Mary Ellen Le Nan as the
women in the photo to the right. The
correct caption to the picture should
read as follows: “L-R: Madame
Gerard (mother of Florent Gerard),
Pierre-Yves La Nan, Monsieur Le
Nan (Pierre’s father), Florent
Gerard and and Dr. Frederick S.
Kaplan, M.D.”
Page 14
F
A
M
Meet
H
i, my name is Wayne
Gopshes. I turn 8 years
old this March. I was
diagnosed with FOP one year ago this
month.
My mom is so thankful to
have all the wonderful guidance and
support of the FOP community, which
helped to get her peacefully through
this year!
I live with my brother Zackary
(11 in March), my mom Traci, and my
dad Wayne. We live in Maryland. I am
in first grade at a new school this year.
I like it.
Mom describes me as "all
boy" and "very active!" I like to ride my
ATV and dirt bike (with training
wheels). This is something I did before
my FOP diagnosis. I still get to ride
sometimes in my backyard or at the
neighborhood park. I am proud that
Travis Pastrana, a professional
motocross rider, saw a picture of me
and my FOP story and sent me some
I
L
Y
the
A
L
B
U
M:
Gopshes
autographed goodies
in the mail!
I also like to
play with my brother,
Zack. We play basketball and collect
sports cards.
Sometimes he helps
me with my homework. He is a good
big brother.
I am happy
and having fun, even
though I've had lots
of challenges since I
was a baby. I had my
big toes 'fixed' at
Johns Hopkins when Wayne and Traci
I was 2. I have seen
lots of different specialists. Last year
my parents found out I have glaucoma.
I have had seven surgeries on my
eyes, and afterwards it was sometimes
painful to open my eyes. One time I
had them closed for 11 days straight!
My mom was going crazy!
Three years ago
while my Dad was rubbing
my back, he found a bump
near my spine. We quickly
had a biopsy done. We were
misdiagnosed with Nodular
Spindle Cell Faschittis. We
were told to watch it, but that
it was not dangerous. We
watched as it moved and
changed shape for a year. I
started to lose range of
movement in my shoulder
and that is when we had a
second biopsy at children's
hospital -- misdiagnosed as
the first. It was very disturbing for my family.
Finally, the doctor
who treats me for my glaucoma referred me to a doctor who was able to diagnose FOP.
Zackary (back), Wayne
(right) and their dad,
Wayne, at Disney World.
share a kiss at Hershey Park.
I am happy to say that we
have met Dr. Kaplan, Dr. Glaser and
everyone else who's working so hard
for us at the lab. I am also grateful that
we have the IFOPA. The communications I've had through them have
brought me through hard times and
carried me through this year smiling
and knowing a happy life still will be.
--Wayne Gopshes
Thanks for reading
Wayne's story.
As Wayne's mom, I am
happy to say that the FOP
diagnosis has been harder
for me (emotionally) than
Wayne. Wayne is happy, loving life and it is my hope that
he will always stay that way.
As the one year anniversary of my son's diagnosis
grows near, I've been nervous about how I'll spend that
day. Now I know I’ll choose
to be happy with him and
celebrate for today.
Thanks to everyone!
With love in our hearts...
-- Wayne, Traci,
Zack and Wayne
Page 15
HIGHLIGHTING OUR STARS:
MEMBER ACCOMPLISHMENTS
Jelena Milosevic
Carol Zapata-Whelan
In 2005, Jelena translated the book No Pity: Forging a
Carol’s memoir on her son Vincent's brave struggle
New Civil Right Movement by Joseph P. Shapiro into
with FOP, Finding Magic Mountain: Life with Five
Serbian. The book is about the disability movement
Glorious Kids and a Rogue Gene Called FOP, will hit
and its development in the United States. "It is a very
bookstores in April of 2006. It includes a brilliant fore-
good guideline for the countries where this movement
word by Dr. Fred Kaplan and inspiring testimonies
has recently begun its life and for us who proudly rep-
from the FOP community. Most of the book's proceeds
resent the disability movement pioneers in Serbia,"
will go to FOP research at the University of
Jelena said of the title. "It is definitely one of my
Pennsylvania, FOP patient needs, and the Children's
greatest professional achievements so far."
Hospital of Central California. Carol wrote Finding
###
Holly Pullano
Though she has still one part-time semester of college
remaining, Holly has obtained her first full-time position in the field of journalism, as a staff reporter for the
Fairfield Citizen-News in Fairfield, Conn. She starts
the position in early January of 2006. In her new role
Holly will primarily cover education, health and community news. Holly will receive her Bachelor's degree
in Journalism and Communications in May from
Quinnipiac University and plans to enroll in graduate
school at Quinnipiac in the fall of 2006.
International FOP Association
P.O. Box 196217
Winter Springs, FL 32719-6217
Address Service Requested
Magic Mountain to raise support for FOP work, help
identify patients and share an inspiring story that
touches on the humor of life in a large family. She
says: "Our account is only a small part of the FOP
story, which takes as many inspiring forms as the families who battle this disease -- but I hope it can help
advance our cause in some small way."
###
If you would like to honor an FOP member who has recently
received an award (both academic or professional), become
engaged or experienced another noteworthy achievement,
please submit an email to [email protected] with all of the
pertinent information and we’ll include it in our next newsletter. Note: Please keep submissions to less than 50 words so
we can accommodate all requests.
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