Final Lifeline 6(Revised - Cooley`s Anemia Foundation

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Lifel ine
March 2004
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father of two healthy children it broke my
heart to see these children and their
parents suffer. We really have to redouble
our efforts to educate people about
thalassemia. And we need to get new
committee people on board so that this
event will be even more successful. I think
it’s critical to bring in others who are willing
to support the Foundation's work and
hasten the day when the pain stops.”
Cigar Night
Hits New High
Over 150 people gathered in the beautiful
Grand Havana Room on November 7 for
CAF’s annual Cigar Night. The popular
event honored special guest Ron Purpora
of Garban-Intercapital and raised a record
breaking $174,000. In addition to a
sampling of the finest cigars, guests
enjoyed a cocktail hour, delicious sit down
dinner and open bar, all enhanced by the
breathtaking view from atop Manhattan’s
famous 666 Fifth Avenue.
Frank Fusaro, Ron Purpora
Giordano and Bob Ficarra, who quickly
educated me about thalassemia.
For the fourth year, Frank Fusaro chaired
the evening, a responsibility he assumed
soon after joining CAF’s Board of
Directors.
“I’d never heard of thalassemia before
then, never even knew it existed, even
though I’m of Italian descent. Once I
understood all that is involved with the
disease and met some of the kids, I wanted
to help.”
“I got involved with CAF as a result of my
involvement on the Board of the Columbus
Citizens Foundation,” Mr. Fusaro says.
“Through CCF, I came to know Jimmy
Chairing the Cigar Night requires a lot of
work and dedication, but Mr. Fusaro thinks
it’s worth it. “I’ve met so many wonderful
people, so many brave children. As a
the
Fight
Against
Thalassemia
“Thank you for keeping my child alive”
CAF thanks Mr. Fusaro, Mr. Purpora and all
who helped to make this Cigar Night such
a special evening.
But thanks to Stony Brook University
Hospital’s directed donor program, Robert
DiBene is able to send a personal “thank
you” to some of the people that donate
blood for his daughter.
U.S. Postage
Paid
New York, NY
Permit No. 4814
Address service requested
Leading
Mr. Fusaro gratefully acknowledges the
hard work of numerous people, including
Tony Laurino, Bob Ficarra, Frank Marzano,
Dean Hernan and Tony Viola. He has
special praise for this year’s honoree,
calling Ron Purpora “one of the most
intelligent, philanthropic and genuine people
I’ve ever met. He’s a terrific family man
and husband and a good friend, and he
really threw himself into everything. He’s
the sole reason that this was a recordbreaking event.”
Non-Profit Org.
129 - 09 26th Avenue, Flushing, NY 11354
Cooley’s Anemia Foundation
That’s the message that parents of children
with thalassemia want to send to the
millions of people that donate blood every
year. Most of the time, a parent doesn’t
know exactly whom to thank – he just
knows that somewhere out there, a stranger
rolled up a sleeve and gave the blood that
is currently meeting his child’s needs.
Under a directed donor program, individuals
may donate blood that is earmarked for a
particular person. Often, the donors are
friends or relatives of the patient; but
sometimes, they are complete strangers
with no connection to the family - such as
Larry Funk, one of the people who donates
for DiBene’s daughter, Dana.
Funk became involved with the directed
donor program three years ago, purely by
chance. A distributor of promotional items,
he was at the SBUH blood bank on
business when the blood bank’s director,
same blood type and I was provided with a
letter from the DiBene family asking for
directed donors, as well as a folder from
CAF,” Funk explains. Funk immediately said
he would participate.
“It was really a no-brainer,” he says. “As
soon as I learned I’d be helping a child, I
said ‘of course.’ I have 3 kids myself, and if
any of them had some kind of issue where
they needed blood, I’d want someone to
help out the way I’m helping out.”
Blood donor Larry Funk with his own children
Jennifer L. Peace, asked him if he knew his
blood type.
“When I said ‘A positive,’ Jennifer asked
me if I’d be interested in donating,” Funk
says. When he came back to make his
donation, Peace told him about their
directed donor program.
Although there are a number of hospitals
that have directed donor blood programs
around the nation, Stony Brook University
Hospital’s is the only one in New York’s
Suffolk county. Under the program an
individual who needs blood fills out a
directed donor consent form. This means
that people with the appropriate blood type
– whether family members, friends or just
people from the community – can come in
to donate blood or platelets in that
individual’s name. Blood donated in this
manner is then held for up to 25 days for
use by the specified individual. If the
“They told me they had someone with the
(article cont’d page 3)
contents
Legislative News
3
• Profile: Senator Arlen Specter
Philanthropy News
4
• Gala • New York State • CCF Supports CAF • Winter Wonderland • New Jersey Elks
• OSIA • Doing Well in Caldwell
Patient News
7
• To Pump or Not to Pump • Meet Eva Chin • Patient Profile: Jesal Kapasi
• In Memoriam • Incentive Awards • TAG Conference • Iron Measurement
Medical News
10
• TCRN Trials • Oral Chelators • CDC Blood Safety • Medical Advisory Board
• Seminar for Doctors • ASH
Chapter News
12
• Chapters Gather in NYC • Atlanta Chapter • Chapter News • Chapters Fund Study • Florida
International News
15
• OSIA President Addresses Thalassemia Conference
Spotlight
16
• Cigar Night Hits New High
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(cont’d from front page)
individual does not require a transfusion in
that time period, the blood is then released
for use by any person who is in need of
blood.
President’s Message
As many of you know, prayer plays an
important part in my daily life. I’ve always
believed that, for whatever reason, the act of
praying does produce results.
I’ve recently been encouraged by news that
the National Institutes of Health have started
two studies that are examining the possible
role prayer and other types of “distant
healing” might have in the treatment of
disease.
Frank Somma
It will be some time before these studies
conclude, and by themselves they will not
prove anything one way or another. But I’m
excited that more attention is being focused
on this issue, because I believe that managing
any illness involves more than just physical
treatment (as important as that is!)
And what one person considers prayer might
just be positive thoughts or an optimistic
outlook to another. In the end, I think we
would all agree that knowing that others are
thinking about and concerned about our well
being can be a powerful tonic all by itself.
Whether those of you reading this believe in
the power of prayer or not, I’d like to ask
something of you: I’d like each and every one
of you to take one minute out of every day to
concentrate on someone with thalassemia. If
you know someone personally, concentrate on
that person; if you don’t, pick someone out of
this newsletter, or out of other issues of
LIFELINE. And for a full 60 seconds every
day, I want you to turn off the TV and the
computer and do nothing but devote your full
attention to quietly thinking about that person
and his life and wishing for him a day when
blood transfusions and drug treatments are no
longer necessary.
“It’s really a win/win situation,” says Peace,
explaining that the person making the
donation feels a personal connection
knowing that the blood is going to a specific
individual. It also enables the family of this
patient to feel that they too are making a
difference, not only in their child’s life but
also by helping the hospital and other New
York patients in need.
Stony Brook’s program benefits a wide
range of people, including those with
thalassemia, cancer or cardiac problems and
babies in the neonatal intensive care unit.
It can’t hurt and it might help. Let’s do it and
see.
Frank Somma
National Executive Director’s Message
Jayne Restivo
Things are never exactly quiet at CAF, but the
last few months have been a real whirlwind.
In this issue, you’ll read about some of the
things that have kept us busy – like the
American Society of Hematology conference,
our “CAF in the City” chapter meeting, and
numerous fund raisers – but there’s so much
more that happens on a daily basis that
doesn’t get reported.
All this focused activity brings about
wonderful results, whether they’re
broadbased, like the Thalassemia Clinical
Research Network and the CDC’s
thalassemia-based initiative, or personal, like
the heartwarming story of Gwen, a patient
whose life was literally saved by a
conversation she had with a CAF staff
member (see page 7).
This level of activity just proves that CAF is
really on the move. Sometimes literally, as
witness my recent trips to Tampa to address
the State Presidents of the Order Sons of
Italy in America and to Dallas to meet with our
Texas chapter. But more often, CAF is
working to move mountains from its national
base in Flushing, the chapter headquarters
across the country, and the homes and
offices of its dedicated Board of Directors
and volunteers.
This is what CAF is all about: keeping one eye
firmly on the big picture and the other on the
needs of the individual. It’s difficult, but with
the guidance of our Board, the invaluable
support of our chapters and feedback from
patients and parents, we’re moving forward
on both fronts.
Jayne Restivo
statement of purpose
EXECUTIVE COMMITTEE
Frank Somma
Cammie Brandofino
Terri DiFilippo
Ralph Colasanti
President
1st Vice President
Treasurer
Secretary
Mark Alessi
Nunzio Cazzetta
Amy Celento
Peter Chieco
Robert Ficarra
Diane Germann
Joseph Giammalvo
Diane Kamble
Richard Mancino
Gargi Pahuja
Concetta Paradiso
Peppina Turck
Elliott Vichinsky, MD
Jayne Restivo
Craig Butler
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National Executive Director
Lifeline Editor
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 : 129-09 26th Avenue, Suite 203, Flushing, NY 11354
(800) 522-7222 (718) 321-CURE (2873) (718) 321-3340 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.
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“One of the wonderful things about the
program,” Peace says, “is that I’ve had
people say, ‘You know what? I just donated
for Little Jimmy and never realized before
how important giving blood is. You’ve got
me now – I’ll be coming back as a routine
donor.”
Funk, who makes blood donations every 2
or 3 months, thinks that the directed donor
program “personalizes the donation process
and gives me a special feeling and
commitment about doing it.”
“Giving blood is something that more people
should do,” he says, whether it’s a directed
donation or a “regular” one. “It’s an hour
out of your life – and it’s so much more
important than anything else you could be
doing.”
CAF applauds Larry Funk’s selflessness, and
the selflessness of all the men and women
who make it a point to give blood – the
priceless gift of life.
For more information about Stony Brook’s
directed donor program, please contact
Jennifer Peace at 631-444-7586.
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Profile
Senator
Arlen
Specter
“I believe that healthcare is a capital
investment. Having a healthy society is the
fundamental base to having a society that is
productive, advanced, and a leader in the
world community.”
So says Senator Arlen Specter (R-PA),
who as Chair of an important Senate
subcommittee has been a champion of
numerous projects that benefit the
thalassemia community. In the midst of a
busy legislative session, the Senator
graciously took the time to answer some
questions.
How did you first become aware of
thalassemia?
Dana DiBene
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I first became aware of thalassemia through
my work as Chairman of the Subcommittee
on Labor, Health and Human Services and
Education. My position has allowed me to
take the lead in securing funding for
meritorious research projects for diseases
like thalassemia that hold a realistic
potential to save and extend lives. I have
always supported increasing funding for NIH
(which I call the crown jewel of the federal
government), the CDC and CAF.
Have you had any contact or relationship
with Childrens Hospital of Philadelphia or
the thalassemia center there?
I have visited the hospital on many
occasions and have worked to secure
funding for many projects at the hospital,
including funding for new equipment. I will
continue to work closely with them to
ensure that they have the most advanced
technology and equipment to adequately
treat thalassemia and other diseases.
Beyond the Thalassemia Clinical Research
Network, what kind of governmentsupported projects do you think thalassemia
supporters should focus on?
I am currently sponsoring legislation that
would establish a National Cord Blood Stem
Cell Bank Network to prepare, store and
distribute human umbilical cord blood stem
cells for the treatment of patients and to
Senator Arlen Specter
support peer-reviewed research using such
cells. Blood cord stem cells have been
identified as a viable source for a cure for
thalassemia and other blood diseases. This
legislation could help aid research and
treatment efforts by establishing the
network and making the program available
for federal funding. Although this particular
bill is still pending in Congress, we were
able to secure $10 million in appropriations
for a similar National Cord Blood Stem Cell
Bank Network.
What can be done to help increase support
of thalassemia programs?
Currently, we are fighting a war on terrorism
and in Iraq to protect the nation’s security,
which remains a high priority. Increasing
funding for NIH and other healthcare
projects has become increasingly difficult,
but I believe that there are enough federal
dollars to provide for meritorious research
projects to fight disease and to fight the war
on terror. I will continue my fight to ensure
that NIH is adequately funded.
I encourage CAF and concerned
thalassemia patients to continue to be
involved in the legislative process by
contacting the offices of the U.S. Congress.
Together we will work to find a cure. As
members of Congress, we are obligated to
meeting the interests of the American
public. The most primary of these is the
investment in healthcare to combat,
prevent, and eradicate disease. I will stand
by my promise to ensure that funding for
the NIH, the CDC and other healthcare
providers is adequate so that these
institutions can continue to make
advancements in finding treatments and
cures.
Cooley’s Anemia Foundation
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Annual Gala Set for April
It may have seemed as if the winter would
never end, but spring is finally right around
the corner – and so is CAF’s "Springtime in
New York" dinner dance!
Hosted by Gianna and Chazz Palminteri,
this delightful event is slated for April 21 at
New York's Tavern on the Green
restaurant. Cocktails will be served at 6:00,
followed by a delicious dinner at 7:00. Live
music will accompany the festivities, which
will also include live and silent auctions and
a special raffle. This year's honoree is
Emmy Award-winning actor Joe Pantoliano.
“We’re thrilled to welcome Joe Pantoliano
to the CAF family,” says CAF National
Executive Director Jayne Restivo. “His
immense talents have enabled him to play a
wide variety of roles, whether starring on
Broadway in the romantic comedy
FRANKIE AND JOHNNY IN THE CLAIR
DE LUNE or playing a take-charge FBI
agent in THE HANDLER. Now he’s taking
on a new role, that of an invaluable ally in
the battle against thalassemia.”
Joe Pantoliano
New York
State Awards
Grant to CAF
The NY State Department of Health has
awarded $90,000 to CAF for support of
general operating expenses.
sit for a personalized caricature portrait;
and let out a little energy through numerous
other activities.
CAF is appreciative of all those legislators
that have acknowledged our important
work with this grants. Special thanks are
due to the New York Conference of Italian
American State Legislators (NYCIASL),
whose members have been consistent
supporters in the battle against
thalassemia.
When they needed a break, they had their
choice of delicious sandwiches, sodas,
candy, popcorn, and other
treats, or they could be
entertained by a great deejay
or any of a dozen or so
performers costumed as
favorite characters from
television, film and fairy tales.
“I am pleased to once again assist in
obtaining funding to help search for a cure
for this disease and help those afflicted to
live a longer, fuller life,” said Senator
Serphin R. Maltese, a member of the
NYCIASL and a dedicated friend to the
thalassemia community. “CAF should be
commended for its tireless work in fighting
thalassemia and helping to get the
message out to those who might be
carriers of this genetic disease. We will
continue to support their efforts.”
CAF acknowledges the generosity of the
Senate and the Assembly, and applauds
their foresight and vision.
Tickets are $300 each; special sponsorship
packages are also available. Contact Jo
Ann Barbella at 800-522-7222, ext. 202.
Columbus Citizens Foundation Supports CAF
The Columbus Citizens Foundation has
once again awarded CAF a generous
donation of $25,000, in recognition of CAF’s
efforts in the battle against thalassemia.
Parade in New York City, of which CAF is
always a part. A Public Service
Announcement from CAF is traditionally
broadcast during this televised event.
Founded by Generoso Pope and Judge S.
Samuel Di Falco, the Columbus Citizens
Foundation is dedicated to preserving the
rich Italian-American heritage and supporting
a range of philanthropic causes. Determined
to make a difference, the Foundation has
seized opportunities throughout its history
to improve the lives of individuals, to enrich
society and to celebrate the contributions of
Italian-Americans to this country.
“The Columbus Citizens Foundation’s
support is absolutely invaluable,” says CAF
National Executive Director Jayne Restivo.
“Its generous donation is an enormous aid,
but equally important is the exposure that
CAF receives through participation in the
Parade – allowing us to reach not just those
who flock to Fifth Avenue, but the many
thousands more who watch on TV.
Among the Foundation’s high profile
endeavors is the annual Columbus Day
WKTU’s “Goumba Johnny” Sialiano
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Cooley’s Anemia Foundation
Wonderland Event Brightens
Dreary Winter
“CAF is deeply appreciative of the
Foundation’s steadfast support of our
goals.”
Over 900 people –
most of them excited
children – packed
Manhattan’s Chelsea
Piers on February 8 as
CAF held its first Winter
Wonderland fund raiser.
Hundreds of children
delighted in this first class escape from the
winter doldrums, taking advantage of every
opportunity to slide down a giant inflatable
slide; learn how to twirl plates on a stick or
walk on stilts; put on padded rubber suits
and engage in a little sumo wrestling; jump
and twirl around the bouncy room; beat
their parents at miniature golf; watch as an
artisan sculpted little animals out of candy;
New Jersey Elks
Lend a Hand
Parents
and
children alike were also
able to indulge in a little
stargazing. Celebrities
who attended included
Chazz and Gianna
Palminteri, Joe Piscopo,
Joe Pantoliano,
Federico Castelluccio,
John “Goumba Johnny” Sialiano, Daniel
Rodriguez, Bobby Cannavale, Scott Cohen,
Macey Cruthird, Paulie Litt, Catherine
Hickland, Mark La Mura, Michael Amante,
Cady Huffman and Pat Cooper.
National Executive
Director Jayne
Restivo and CAF
Special Projects
Director Jo Ann
Barbella worked
closely with the
committee to ensure that things ran
smoothly, and Wendy Morris of WM Public
Relations provided valuable public relations
services. Hollywood Pop Gallery organized
the various activities and rides for the
guests.
The Winter Wonderland was organized by
CAF Board member Gianna Palminteri, who
was helped in her efforts by committee
members such as Doreen and Gene
DeMarco and Christy Gallop. CAF
This winter has been one of the toughest
on record in New York, but this event really
chased away the winter doldrums for all
who attended.
The Benevolent and Protective Order of
Elks is one of the oldest and largest private
organizations in the United States. In New
Jersey alone, there are 119 lodges with
over 41,000 members – and CAF is
delighted to say that these wonderful men
and women can be counted as friends of
the thalassemia community.
Jersey State Elks Association, requesting
that the state association also consider a
donation. The state Association, under the
leadership of Past National President Arthur
Mayer, acted favorably upon the request,
designating a $5,000 donation to the
Foundation.
The officers and members of New Jersey’s
Belmar Lodge #1997 have been donating
$500 to CAF for nine years, having learned
about thalassemia from current CAF
National President Frank Somma.
In December, a letter was introduced from a
member of the Belmar Lodge to the New
“I am thrilled and delighted that the Belmar
Lodge and the New Jersey Association
have acted in such a generous fashion,”
said Frank Somma. “That they have done
all of this independently, without being
approached by CAF, really speaks to their
compassion and caring. On behalf of CAF,
I thank all the members of the Elks from
the bottom of my heart.”
Cooley’s Anemia Foundation
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OSIA Continues Support of CAF
Doing Well in
Caldwell
On February 26, over 100 people attended
a special benefit for the Cooley's Anemia
Foundation organized by Anthony Pope and
Joe Cifalino at Luce Restaurant in Caldwell,
New Jersey.
Hosted by motion picture and television star
Joe Piscopo and CAF spokespeople
Gianna and Chazz Palminteri, the evening
included a delicious dinner, open bar, silent
and live auctions and music to dine by. A
raffle drawing was overseen by actor
Federico Castelluccio. CAF National
Executive Director Jayne Restivo and CAF
Board member Amy Celento spoke briefly,
and Amy's son, James Stamateris, helped
with the raffle drawing.
OSIA presents check to CAF
The Order Sons of Italy in America (OSIA),
through the Sons of Italy Foundation, once
again demonstrated its support of CAF by
presenting the Foundation with a check for
$100,000 at a January 30 dinner, held by
the New York State Grand Lodge of OSIA.
Accepting the donation, CAF National
Executive Director Jayne Restivo praised
the brothers and sisters of the OSIA for
their decades-long commitment to CAF.
“There may be organizations that are larger
than OSIA – not many, but a few – but
there is no organization with a heart as
large as yours,” Ms. Restivo said.
Joseph Sciame, National President of OSIA
and a Board member of CAF, praised the
membership of the OSIA for their
dedication. “Once again, our OSIA sisters
and brothers in the 700 lodges in America
make us proud by raising the needed funds
for CAF in order to promote education and
research,” he said. “I know we of the
OSIA stand tall in terms of our absolute
support for the health and wellbeing of
those who carry the burden of thalessemia.
Let's pray, hope and continue to raise the
needed funds to eradicate this life
threatening disease.”
"It is a pleasure to have been present for
the generous gift to CAF,” said Paul S.
Polo, President of the Sons of Italy
Foundation (SIF), the charitable arm of the
OSIA. “Our Foundation's goals highlight
the need for research in health care, and
our SIF Board members are ever so proud
to have assisted in this endeavor.”
The thousands of members of the OSIA
have been among CAF’s staunchest allies
in the fight against thalassemia for many
years, donating a cumulative total in excess
of $2,000,000 to the Foundation. Individual
lodges hold many fund raising events every
year, and many are instrumental in
sponsoring blood drives as well.
“The OSIA’s continuing support has played
a tremendous role in CAF’s battle against
thalassemia,” said Ms. Restivo. “That
people with thalassemia are living longer,
fuller lives is due in large part to the OSIA’s
love and support. We could not ask for a
more generous or caring family.”
Gianna and Chazz Palminteri
“CAF is very fortunate to have such
generous friends,” said Ms. Restivo.
“Anthony Pope, Joe Cifalino, Joe Piscopo
and Gianna and Chazz Palminteri planned,
organized and ran this lovely evening
independently. It was really a gift for CAF,
and we are extremely grateful for their
thoughtfulness.”
For up-to-the-minute news
about thalassemia-related
issues, visit our website,
www.cooleysanemia.org
To Pump or Not to Pump:
A Patient's Perspective
Meet Gwen C., a thalassemia major patient
who quit using Desferal—and nearly paid
with her life.
Almost anyone with thalassemia major (and
some with thalassemia intermedia) would
say that the most bothersome part of having
thalassemia is “Using the pump!!!” Every
patient who needs Desferal has been told
time and again the importance of using the
pump regularly, but most find it difficult to
comply. And the consequences of iron
overload don’t become obvious right away.
The effects of iron overload can be
compared with those of smoking. Smoking
doesn’t cause problems until the lungs have
become severely damaged from continual
exposure to tobacco. Likewise, skipping a
day or two of Desferal doesn’t cause any
immediate changes, often leading to more
skipped days. The effects aren’t apparent
right away, but in reality the iron continues
to build up, causing further unseen
damage—until one day a person wakes up
to heart palpitations; finds his/her bones
feeling brittle and painful; experiences
extreme exhaustion; develops diabetes; or
notices a greenish tinge to the skin. By the
time these effects are obvious, it’s often too
late—as Gwen almost found out.
Gwen was diagnosed with thalassemia at 2
years old, but did not begin transfusions
until she was 8, due to concerns about iron
overload. (At the time, Desferal was not
yet available.) She began chelation at the
age of 12. Initially she was very compliant,
but her commitment began to waver around
the age of 16. She decided she would
rather go out with her friends and “have a
life, instead of using Desferal.” Her doctor
warned her that without Desferal, she
wouldn’t have a life, period, but Gwen didn’t
listen. She began making excuses for
herself, promising herself that if she skipped
her pump one night, she would definitely
use it the next. But the next night, it was
the same excuse. By the time she reached
her early twenties, Gwen had completely
stopped using her Desferal.
In her mid-twenties, she began getting mild
6
Cooley’s Anemia Foundation
by Radhika Sawh
Gwen C. today
pain in her bones, her stomach began
enlarging, and her skin darkened to an odd
shade. She dismissed warnings from her
hematologist that these changes were due
to iron overload. As time passed, Gwen
began getting sick frequently. Her skin
became darker, her bone pain worsened and
her stomach continued to grow (because
her iron buildup was enlargng her liver,
although she didn’t realize this). Soon she
found that she had difficulty climbing up and
down stairs, walking and lifting. But she
took this in stride, believing it was a normal
consequence of thalassemia.
Eventually, Gwen was given a cane and
prescribed heavy pain medications. At 28,
she was diagnosed with osteoporosis. By
May 2002, at the age of 29, her Ferritin
level was almost 9,000. She looked and
felt like an elderly woman. Gwen was
certain she was dying, and nothing could be
done about it.
In 2002, she decided to walk with the CAF
float at NYC’s Columbus Day Parade.
During the Parade, Gwen chatted with some
of the other thalassemia patients. Unlike
Gwen, their lives seemed to be fairly
normal. But what really got to her was the
fact that the other patients were walking
around without a problem, while she
clutched her cane and was unable to stand
for long periods of time. Why weren’t they
suffering like she was?
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She got her answer from Eileen Scott of the
CAF staff. They began to talk about why
Gwen was sickly. When Eileen heard that
Gwen had stopped using her pump years
ago, it was clear to Eileen that iron overload
was causing Gwen’s problems. She told
her, “You have a choice – you can either
start taking care of yourself, or you can die.
It’s up to you. If you want to get better, I
will help you, but you have to be willing to
do whatever it takes.”
Eileen put Gwen in touch with Dr. Sujit
Sheth at Columbia Presbyterian Hospital.
After reviewing her Ferritin level, he told her
bluntly that the only way she was going to
get better would be to make up for all the
years she had been noncompliant. He
predicted it would take 2 to 3 years to get
her Ferritin down to acceptable levels and
she would need to have a port implanted
and begin using Desferal 24 hours a day, 7
days a week. Gwen took this information
back to her local hematologist and
discussed the pros and cons of getting a
port. She realized “at this point, I was
basically on my way out” and decided to
take Dr. Sheth’s advice. Within a month,
she had a port implanted and began using
Desferal intravenously.
She underwent a liver biopsy, and scored an
18. (A score above 12 puts a patient in
danger of going into heart failure). Gwen
became a model of compliance and used
her Desferal 24 hours a day. By February
2003, the pain in her bones began to ease
up and her stomach decreased in size. Two
months later, she no longer needed her
cane, and by May, she was able to chase
her nephew around the house without
difficulty. In August, with her Ferritin level
less than 1000, Gwen scored an 8 on her
SQUID testing. Her hard work had paid off!
Today Gwen’s skin coloring is back to
normal, her Ferritin is 613 and her stomach
is significantly smaller, although her liver is
still somewhat enlarged. She can take 2
days a week off from her Desferal, and her
doctors are now talking about removing the
port. Asked if she thinks she will revert her
old ways, Gwen answers emphatically “No
way. I wouldn’t do that to myself again,
because now I know what it’s like to feel
good.”
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Incentive Awards Announced
Meet Eva Chin
Call CAF’s patient services department and
chances are the perky voice you hear
belongs to Eva Chin, our new patient
services coordinator.
Patient
Profile
Jesal Kapasi
If you had to choose one word to describe
Jesal Kapasi, “effervescent” might very well
be it – although “energetic” or
“enthusiastic” would be close seconds.
Not to mention “intelligent,” “attractive,”
“sharp” and a whole host of others.
Born in India, Jesal was raised in the Middle
East and now lives in Houston, Texas, to
which she came for college. Her diagnosis
of beta thalassemia major (at seven months
of age) “was really a lucky fluke,” she says.
“We were at the hospital because my
brother was sick. The doctor took one look
at me and asked my mom to get me tested,
as I looked severely pale.”
Eva Chin
Eva comes to CAF with significant
experience with patients and families.
While attending SUNY Stony Brook (from
which she graduated with a B.A. in
sociology), Eva worked at Stony Brook
University Hospital and after graduation
was employed at Memorial Sloan-Kettering
Cancer Center.
Eva is delighted to be at CAF and says she
“loves interacting with patients. I hope
that’s reflected as I continue to work here
at CAF.”
In Memoriam
We regretfully report the loss of
Cooley’s anemia patients
Nicholas Alessi
Danny Giannikouris
Thomas Leirer
Pasqua Tina Lepore
Meuy Saeteurn
Michael Spano
and extend our sympathies
to their friends and family.
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Twenty-seven men and women with
thalassemia have earned 2003-2004 Patient
Incentive Awards from CAF. These awards,
ranging from $500 to $1,500 each, are
given to people with thalassemia intermedia
or major who wish to pursue higher
education on the vocational, undergraduate
or graduate level.
Jesal credits her childhood doctors in the
Middle East with helping to instil in her a
positive outlook about thalassemia. “They
were always able to soothe my parents’
fears and answer questions whenever I
decided to do something drastic,” she says.
“Due to my doctors’ views, coupled with
those of my family, I never learned to see
thalassemia as a limiting factor or as an
issue with my life.
But Jesal’s family was (and is) equally
important. “My family is the source of my
strength and my faith,” Jesal says. “They
have raised me to be the person I am and I
know I didn’t make that an easy job. I rely
on them for everything, especially for
encouraging me and believing in me, no
matter what. I love them and would do
anything to make them smile.
“I also have a great network of friends, in
Texas and around the U.S., that I rely on for
my sanity check. They pester me if my
ferrittin is high, and care for me when my
blood count is low or I am feeling sick. They
are just the most amazing people, and I am
thankful I know each one.”
Jesal also has high praise for her current
doctors and nurses, who “put up with my
weird requests and even weirder antics.”
As far as TAG and CAF are concerned,
”they have both been really instrumental to
my life. When I moved to Houston, I called
CAF for information on insurance, hospitals,
Jesal Kapasi
etc. And TAG was where I found my first
thalassemia friends. I have met some
wonderful people through TAG; now, by
serving on its board, I feel that I am
reaching out to others, the way someone
did to me when I needed it.”
Jesal is excited that CAF’s Texas chapter is
being rejuvenated and looks forward to a
stronger network of patients in Texas. The
only drawback that she finds about Houston
is the lack of a thalassemia research center.
“I like to participate in studies,” she says,
“but cannot do so a lot of the times due to
the fact that they need a hospital stay in
another state, and taking off that much from
work is an issue.”
Her job as a computer consultant requires a
fair amount of travel, something that is a
little daunting for some people with
thalassemia. For Jesal, though, “short term
travel is more about big bags than anything
else. Since I am on Desferal, I have to
ensure I take enough medication and
supplies to last the entire trip.
“My parents were always very careful about
travel when I was a child. We never went
anywhere for more than 3 or 4 weeks, but
when I had to move here, they came
through for me. We did research using the
Internet, phone calls to several doctors and
associations, etc. Now they are a lot more
comfortable with me being away from them
and with my globe-trotting ways!”
Jesal enjoys interacting with people and is
excited about the upcoming TAG
Conference. “If you see me lurking around,
come and tap me on my shoulder and say
hello!” she says. “It’s always fun to meet a
new face or play catch up with an old face.”
CAF initiated the Patient Incentive Awards
several years ago, in response to the
growing number of thalassemia patients
who were attending colleges and vocational
programs. This year’s recipients are quite
varied, with majors that range from Theater,
Audio Arts & Acoustics and Psychology to
Molecular Sciences, Nursing and Computer
Drafting & Design.
Several of the scholarships are awarded in
memory of thalassemia patients, including
Domenic Amara, Tasos Bovis, Kathy
D’Amico, Donna Faiella, Thomas Mirabella,
Paula Muolo, Daniel Pizzulli, Gina Rago,
Sophie Shioshilos, William Stikkel, Davide
Sorrenti, Michelle Torrisi and Christos
Tsangaris.
A partial list of those receiving awards,
along with their fields of study (if declared)
and schools, includes:
Kunal Bhatt – Biotechnology – Rutgers
University Cook College
Julie Pugkhem – Early Childhood
Education – Bank Street College of
Education
Sharon Cheong – Pharmacy –
University of Georgia
Michelle Rea – Education – Suffolk
County Community College
Anosh Chunara –Biology – California
State University Northridge
Alicia Somma – Theater – Brookdale
Community College
Paul DiLorenzo – Computer Science,
University of California Riverside
Grace Tsai – Nursing – Molloy College
Gina Geloso – Adelphi University
Valerie Malyvanh Jansen – Molecular
Sciences - University of Tennessee
Health Science Center
Jeff Tsang – Environmental Economics
and Policy – University of California,
Berkeley
Jaimee Lynn Versace – Psychology –
Fairfield University
Kevin Johansson - Audio Arts &
Acoustics – Columbia College, Chicago
Michael Viscomi – Computer Drafting
& Design - ITT Technical Institute
Cecilia Li – California State
Polytechnic, Pomona
John Lund – Government &
International Affairs – Augustana
College
Pamelyn Woo – Rhetoric - University of
California, Berkeley
Jeannine Magarelli – Education &
Special Education – Touro College
Margot Martino – Biology – Boston
College
DON’T MISS IT!
18th Annual Thalassemia Action Group
(TAG) Patient/Family Conference
Itasca, IL (30 miles from O’Hare Airport)
May 14-15, 2004
Wyndham Northwest Hotel
Things kick off Friday night with a special
Pajama Pump Party. Conference begins at
8:30 a.m. Saturday and includes medical
workshops, a session on iron chelator
alternatives and information on the
Thalassemia Clinical Research Network.
The Conference will be followed by dinner
at Dave and Buster’s. In addition, Dr.
Patricia Giardina and Susan Winner will be
honored, and we’ll be celebrating TAG’s
20th anniversary.
Ryan Mitchell –Veterinary Assistant –
University of Akron, Northcoast Medical
Training Academy
Guest rooms are $89.00 (plus tax) per
night; deluxe one bedroom suites are
$164.00 (plus tax). Hotel reservations
(630-773-4000) must be made by April 23
in order to receive the Conference rate.
Registration deadline for the Conference
itself must be made by May 1. Contact:
Gargi Pahuja at (201)-533-8454 or
[email protected] to register or for
more information.
John Zuke – Anesthesiology – Barry
University
CAF congratulates all the recipients of the
Incentive Awards and wishes them well in
their continued studies.
Non-Invasive
Heart & Liver
Iron
Measurement
Individuals with thalassemia are eligible to
take advantage of new technology being
used in ongoing clinical trials to obtain noninvasive measurements of liver and cardiac
iron. The SQUID at Columbia-New York
Presbyterian Hospital and Ferritometer at
Oakland’s Children’s Hospital & Research
Center measure liver iron, while the T2*
technology being used at Children’s
Hospital of Boston and Children’s Hospital
of Los Angeles measures cardiac iron. To
make an appointment for the T2* in Boston,
please contact Kelly Walsh at (617) 3552797; appointments for the other three
machines may be made by contacting CAF
at (800) 522-7222.
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TCRN Trials Up and Running
by Radhika Sawh
Two multi-center Thalassemia Clinical
Research Network (TCRN) clinical studies
are now available to thalassemia patients in
North America.
One of the studies focuses on
osteoporosis, or low bone mass, a common
complication seen in people with
thalassemia major and intermedia as they
age. The purpose of this study is to screen
individuals with thalassemia to determine
the incidence of low bone mass.The other
study examines the safety and
effectiveness of current treatment regimens
for chronic hepatitis C in individuals with
thalassemia. The incidence of hepatitis C is
significant among thalassemia patients, in
whom liver damage is already present due
to iron overload.
Two studies that will hopefully become
available by summer 2004 include a study
to determine the effectiveness of
combination therapy with Desferal and
deferiprone on cardiac function and a study
to evaluate the safety and efficacy of
Decitabine, a drug being investigated for its
effects on fetal hemoglobin.
In order to be considered for enrollment in
current and future TCRN studies, patients
must first agree to be entered into the
TCRN patient registry. This registry
contains medical information relating to
thalassemia, its complications and
treatment. TCRN investigators utilize this
registry to study the common medical
issues facing thalassemia patients and to
identify patients who may be eligible for
future studies.
A collaborative network of the five major
thalassemia treatment centers and 18
satellite clinics in North America, the TCRN
is funded by the National Heart, Lung and
Blood Institute (NHLBI).
Information: CAF Patient Services,
(800) 522-7222
CDC Blood Safety
and Surveillance Program
The Centers for Disease Control and
Prevention (CDC) have initiated a program
to ensure that thalassemia patients have
access to appropriate information,
treatment and prevention services. CAF
has been assisting the CDC in the
development of the Thalassemia Prevention
Education and Outreach Program. A main
component of this initiative is the
Thalassemia Blood Safety and Surveillance
Program.
By enrolling in the Thalassemia Blood
Safety and Surveillance Program, every
thalassemia patient will be tested for
several blood borne infections FREE OF
CHARGE. The CDC will “bank” a small
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amount of the serum from the confidential
blood sample. The formation of a serum
bank will allow for rapid response to
emerging blood borne threats in the
thalassemia community.
To enroll in this program, patients can visit
any of the Thalassemia Treatment Centers
of Excellence. CAF urges individuals with
thalassemia and their physicians to
establish a relationship with one of these
centers as the centers can provide
specialized treatment for thalassemia
patients across numerous medical
disciplines. Contact CAF at (800) 5227222 to locate a thalassemia treatment
center in your area.
Two Different
Oral Chelators
Receive Fast
Track Status
Medical Advisory
Board Welcomes
New Chairs
CAF is pleased to report that oral chelators
under development by two separate
companies have received fast track review
status from the Food and Drug
Administration (FDA).
“But remember,” says CAF National
Executive Director Jayne Restivo, “that this
is just the first stage in the process. The
most important decision by the FDA will be
when it determines whether or not these
drugs individually are safe and effective. At
this point, we do not know if they will both
be approved, one will be approved, or
neither.”
“In the meantime,” Restivo says, “both
drugs are available under the FDA’s
compassionate use program, although that
use is tightly restricted to selected
indications. Patients should consult with
their doctor to learn whether use of either
of these drugs might be appropriate in their
specific case.”
Ellis Neufeld, MD, PhD, a graduate of
Washington University School of Medicine,
is an Associate Professor at Harvard
Medical School and Director of Clinical
Hematology at Children’s Hospital Boston
and Director of the Boston Center for
Genetic Blood Diseases.
In a joint statement, Drs. Vichinsky and
Neufeld said that “we are delighted and
honored to take on the helm of the Medical
Advisory Board and look forward to working
closely with CAF to further advance the
treatment and care of all people with
thalassemia.”
“Fast track” status means that the drugs
will be granted an expedited review as their
research is reported to the FDA. This
status can be given to drugs that are
intended to treat life-threatening conditions
and that demonstrate the potential to meet
unmet medical needs.
One of the benefits of fast track status is
that a drug company can submit data to the
FDA in stages, as it becomes ready, rather
than having to wait until all data has been
collected. This rolling submission of data
can make it possible for the FDA to issue a
decision on an application for a drug that
has received fast track status more
expeditiously than for one that does not
have such status.
Childrens Hospital Oakland (CHO), Director
of the Northern California Thalassemia
Center, Director of the Hemoglobinopathy
Lab and Transfusion Unit at CHO and
Director of the Sickle Cell Program at CHO.
Dr. Elliott Vichinsky
Dr. Elliott Vichinsky has been named the
new Chair and Dr. Ellis Neufeld has been
named the Vice Chair of CAF’s Medical
Advisory Board. Dr. Vichinsky succeeds Dr.
Alan Cohen, who is retiring from the post
after 11 years.
Elliott Vichinsky, MD, is Chief of the
Division of Hematology/Oncology at
Dr. Cohen, who will remain an active
member of the Medical Advisory Board,
stated in a letter to CAF that “when I
assumed the role of Chairman of the
Medical Advisory Board, my mentors told
me that this would be one of the best
decisions of my career. They were
absolutely right! I have enjoyed every
moment of working with the Foundation.”
CAF extends its thanks to Dr. Cohen for his
years of leadership and looks forward to
working with Drs. Vichinsky and Neufeld in
the years to come.
Seminar for
Doctors
Treating thalassemia is a challenge, both
because the disease is relatively rare and
because complications related to the
disease cross over into different areas of
medical expertise. Keeping current with all
advances in therapy is extremely important.
To meet this need, CAF and the Weill
Medical College of Cornell University have
scheduled a collaborative Continuing
Medical Education (CME) course for April
28 in San Francisco. Sponsored by
Novartis Pharmaceuticals, “The 3rd Annual
Thalassemia Update: Current Management
and Future Therapies” will precede the
annual meeting of the American Society of
Pediatric Hematology/Oncology.
Dr. Patricia J. Giardina, the director of the
New York Presbyterian Hospital / Weill
Medical College of Cornell University’s
Comprehensive Thalassemia Center, along
with CAF Patient Services Director Radhika
Sawh and CAF National Executive Director
Jayne Restivo have organized the upcoming
CME course. Physician attendees can earn
Category 1 credits for participation in the
course which can be applied towards the
AMA Physicians Recognition Award.
Information: (800) 522-7222 Ext.211
Hematologist Gathering Important Opportunity for CAF
What recently drew CAF to the beautiful
city of San Diego wasn’t its world famous
zoo or charming Gaslamp Quarter. It was
the opportunity to interact with the 20,000
physicians and scientists that had gathered
there December 6-9 for the Annual Meeting
of the American Society of Hematology
(ASH).
“The greatest minds in the thalassemia
field from around the world attend the
annual ASH convention,” explains CAF
National Executive Director Jayne Restivo.
“This is why CAF attends every year –
because it gives us the chance to talk oneon-one about the issues that are of the
greatest concern to people with
thalassemia.”
“At ASH,” she continues, “I can be getting
information about an oral chelator trial from
a doctor from Italy, while across the room
CAF President Frank Somma can be telling
a doctor from a small town in the Midwest
about the Thalassemia Clinical Research
Network. Then a few minutes later, Frank
might be informing a scientist about our
Medical Research Fellowships while CAF
Board member Bob Ficarra is sharing
opinions with a doctor who has just
diagnosed his first patient with
thalassemia.”
“The thing that I find most exciting about
ASH,” says Mr. Ficarra, “is the information
exchange with professionals from other
countries. Sometimes there are significant
differences between our experience and
their experience with thalassemia, and
having a direct dialogue benefits both
sides.”
reception for medical professionals,
patients and industry representatives while
at ASH. In addition, CAF mans a booth
during the conference which distributes
large quantities of educational material.
This year, CAF volunteers Bob Ficarra,
Diane Kamble, Zahra Pakbaz, Bruce Rod
and Susan Winner helped to distribute this
material.
“There’s so much that gets accomplished
in such a compact amount of time,” says
Ms. Restivo. “When the week is over, I
just sit back and say, ‘Wow! Did we really
do ALL that?’”
And what about next year’s meeting?
“I’ve already got my bags packed,” Ms.
Restivo says.
CAF also holds a meeting of its Medical
Advisory Board and hosts an informal
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common goal, that of advancing the care
and treatment of thalassemia patients while
we search for a cure.
Chapters Gather in NYC for Meeting
Representatives from ten CAF chapters
gathered together in New York City on
January 17 and 18 for the first annual "CAF
in the City" meeting.
Convened by the national office of CAF, the
meeting allowed the chapters to engage in
an exchange of information between each
other, as well as with national CAF.
Representatives from the Atlanta, California,
Chicago, Florida, Long Island,
Massachusetts, Queens, Staten Island,
Suffolk and Texas chapters attended.
Mr & Mrs Mateen Shah, Texas
CAF National Executive Director Jayne
Restivo distributed revised Chapter
Development Handbooks and updated the
chapters on activities in the national office.
TAG President Gargi Pahuja was also on
hand to discuss TAG's recent and upcoming
activities and goals.
The sessions were informal and included
ample time for questions and answers.
Discussions were lively and informative, and
all those present contributed thoughts and
ideas, many of which were picked up or
developed by others, creating exactly the
kind of synergy that was the goal of the
meeting.
"I think this was a wonderful first step," says
Ms. Restivo, who hopes to hold similar
meetings on an annual basis. "Maintaining
an exchange of information between the
chapters is so important. They are the
lifeblood of CAF, so the more sharing and
communication we have, the better for all of
us involved in the fight against thalassemia."
The meeting opened with a presentation by
Nunzio Cazzetta and Tony Laurino of the
Suffolk chapter, who discussed various fund
raising strategies that have proven effective
in the past. CAF National President Frank
Somma spoke about how the many different
chapters of CAF work together for one
Mr & Mrs Paul Tucci and Mr & Mrs Frank Zito, Queens
Atlanta Chapter Up and Running
Last June, Tahseen Mahmood, whose son
Adnan has thalassemia major, was visiting
the CAF website when she realized there
was not a CAF chapter in Atlanta.
So she decided to start one.
After first calling CAF to find out what
steps to take, Tahseen contacted patients
and parents that she thought would be
interested in forming a chapter. More than
a dozen responded, getting the Atlanta
chapter off to a flying start.
“Our members come from Children’s
Healthcare of Atlanta at Egleston and
Scottish Rite Hospital of Atlanta,” Tahseen
says. “There may be patients from other
towns, like Savannah, so we are trying to
contact and include them.”
The chapter has opened a bank account
and is getting letterhead and cards printed.
It has secured a fixed venue at one of the
hospitals for monthly meetings and has
many plans for the future.
“We had our first Christmas get-together
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at Children's Healthcare in December,”
Tahseen says. “We gifted all the kids, and
honored our social worker, Charlotte Eaddy,
for all the help she provided us. We had
pizzas and picture viewing, and Dr. Anne
Herry attended the party.”
The chapter also has begun fund raising
activities, including placing donation
canisters and printed material at many
business locations. In addition, Tahseen
and chapter member Pawan Kapoor
manned a booth at the Independence Day
of India celebration and raised both money
and awareness. Tahseen and Pawan will
soon attend another medical seminar to
spread information about thalassemia and
to investigate the possibility of free
thalassemia trait screening, as is currently
done in Atlanta for sickle cell trait.
“There seem to be many opportunities
here,” Tahseen says. “We have a very
wide and affluent community of doctors,
business owners and hoteliers, which
should be a potential source of funding.
That is going to be our first big step in
California Chapter
On February 18, Glendale High School and Kaiser
Permanente will held their second annual blood
drive for thalassemia patients from 9:00 a.m. to
3:00 p.m. At a January 21 Kaiser Permanente
blood donor recognition event, Glendale High
School was praised for putting together an earlier
blood drive that brought in about 80 donors. A
member of the California chapter also spoke at
this event, discussing his life with thalassemia
and thanking donors for their support.
The California chapter participated in a Family
Information Fair in Long Beach on February 24,
manning a booth that distributed information
about thalassemia and the chapter.
If any child between 2 1/2 and 18 years of age
who has thalassemia major and lives in California
is interested in getting a wish granted from the
Make a Wish Foundation in California, please
contact Eloise Crawford (310-788-9474) or
Christine Giannamore (800-601-2821). They will
supply information on the Make a Wish
Foundation's program to grant wishes to children
with medical conditions and how you can make a
"wish referral." (Not all wishes can be granted by
the Make a Wish Foundation, of course, but it
doesn't cost anything to make a referral.)
Tahseen and Mohammed Mahmood
achieving success, if we can get some
recognition with them.”
The annual Gift of Life Ball was a huge success,
attracting about 300 people to Leonard’s of Great
Neck on November 22. The honoree was Peter
Barletta, and a special presentation was made to
Dr. Patricia J. Giardina in honor of all that she has
done on behalf of thalassemia patients.
Massachusetts Chapter
A financial representative for MetLife
Financial Services, Tahseen is 35 years old
and is married to Mohammed Mahmood.
In addition to Adnan, she has a daughter,
Inara, and a stepson, Shahzad Mahmood.
When Inara was born, she saved the cord
blood for possible use in a stem cell
transplantation for Adnan, but it was not an
appropriate match.
”So I am still waiting for a cure, like other
parents and patients,” Tahseen says, “and
in the meantime, wishing and praying that
God will answer all our prayers.”
Information: (678) 357-4021or
[email protected].
Kevin Caira, Rudi Viscomi and Jim DeStefano
The Massachusetts chapter held a very
successful 16th Annual Dinner Dance on
November 7 at American Legion Post 440 in
Newton. Guests included Dr. Melody
Cunningham, Childrens Hospital thalassemia
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Queens chapter information: (718) 746-7677 or
[email protected].
Guests at Massachusetts Dinner
program coordinator Jennifer Braunstein, OSIA
Massachusetts President Kevin Caira, and OSIA
national CAF Chairman Jim DiStefano.
New Jersey Chapter
The New Jersey chapter’s annual Night at the
Races fund raiser was held on Friday, March 12,
at the Brooklake Country Club in Florham Park,
New Jersey. A crowd of about 100 people
enjoyed both the racing and the delicious dinner.
The chapter’s annual Golf Classic is set for
Monday, May 17 at the Minisceongo Golf Club in
Pomona, New York. Information: (973) 893-2241
or [email protected].
Queens Chapter
Long Island Chapter
p
you should head to Manhasset Hills Country Club
on September 27 to experience our 3rd annual
Golf Classic. The course is a stunner and the
Country Club is beautiful, so you’re sure to have
a wonderful time. Hosted by CityWide
Demolition & Rubbish removal, this full day of golf
is followed by an extravagant cocktail hour,
awards dinner, prizes, and more fun.
Chicago Chapter
The Chicago chapter would like to invite patients,
family, and friends in the Chicago area to become
actively involved in our events. Monthly meetings
are held on the last Sunday of each month from 3
to 5 pm in the basement of the Rectory at St.
Peters the Apostle Church in Itasca, IL. (For
directions or questions, email
[email protected].)
a
The 2003 Gift of Life Ball, held November 21 at
Marina Del Rey, honored Joseph R. Olivieri of the
Association of Wall-Ceiling & Carpentry Industries
of New York, Inc. and was one of the most
successful fundraisers the Queens Chapter has
produced. Marina Del Rey was the perfect
venue, contributing fabulous food, excellent
service and one of the most beautiful views in the
city. You don’t want to miss it next year!
The Queens Valentine’s Day Dinner Dance at
Villa Leone in New Hyde Park on February 14
was a big success. The honoree this year was
“The Gift of Love” – truly a gift worth honoring.
The 2004 Good Friday Dinner Dance will be held
on April 9 at Russo’s on the Bay in Howard
Beach. The honoree is Joe Siano, President of
the Columbia Association, and Operations
Assistant, Queens West Borough. Anyone who
has attended this fundraiser knows that the party
never ends, the food doesn’t stop coming, the
dancing goes on and on, and no one goes home
till the wee hours.
The Queens chapter has a special football game
planned for May 22, pitting the “New York
Strongest” team from the NY Dept. of Sanitation
against a team from the Phoenix Dept. of
Sanitation. “New York Strongest”
(www.nystrongest.org) plays four games a year
and proceeds from these games are donated to a
designated charity. This year Queens CAF is their
charity of choice for the opening game (venue
TBA).
Summer will bring the chapter’s 2004 Bowl-AThon, sponsored by Verizon (date TBA). Verizon
comes through every year by matching every
dollar contributed to the bowl-a-thon. We hope
you can make it this year!
Whether you are an avid golfer or just a beginner,
Staten Island Chapter
The Staten Island chapter's sixteenth annual "Let
Your Heart Dance" was held on Friday, February
20 at the Hilton Garden Inn. Some 300 people
attended this special affair and enjoyed a full sit
down dinner, a top shelf open bar and dancing.
The chapter also held a day trip to the Showboat
Casino on the Boardwalk in Atlantic City on
February 22, and worked with the Ladies
Philoptochos Society of the Holy Trinity-St.
Nicholas Greek Church on a blood drive on
January 25. The chapter’s annual Trash or
Treasure Day on November 1 was a big success,
as was the October Fashion Show.
The Central Lions Club of Staten Island
generously donated $10,000 to the chapter in
November. Their generosity is greatly
appreciated.
Next up: A blood drive in cooperation with
Tottenville High School in May. Details: 718-7615380.
Suffolk Chapter
November 11 was the date of the chapter’s Beefo-Rama, attended by over 100 people. Pace’s
Steakhouse closed its doors for the event, which
included cocktails, a delicious steak dinner and
beverages, as well as a 50/50 raffle. Over
$50,000 in profit was raised.
A horde of people made it to Café La Strada for
Suffolk’s SuperBowl Sunday event. A wonderful
time was had by all, and $5,000 was netted.
Next up: The annual dinner dance , June 18 at
Leonard’s of Great Neck. Information: 631-8630532.
Westchester-Rockland Chapter
The chapter will hold its annual "Night at the
Races" on Friday, March 26 at the VIP Country
Club in New Rochelle. The cost is $50 per
person, and that includes beer, wine and full
buffet. This fun-filled evening is always a big
favorite, so make your reservation early. Call
(914) 232-1808 for more information.
November 21, the chapter held a special “Night
in Tuscanny” Dinner Dance at the VIP Club. The
event committee was chaired by Maureen Kitson,
a high school student and friend of Michelle
Chieco, a thalassemia patient. Three other
schoolmates – Elizabeth Conner, Katherine
Colihan and Shannan Henry – also served on the
committee. The chapter salutes all of these
young ladies for their excellent work and
admirable selflessness.
Cooley’s Anemia Foundation
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Six Chapters Fund Important Study
Six Cooley’s Anemia Foundation (CAF)
chapters have made commitments totaling
$30,000 to help fund an important research
trial involving the removal of cardiac iron
stores.
Because the treatment for thalassemia
raises the amount of iron in the body to
dangerous levels, removing excess iron
from the body is of great importance to
people with thalassemia.
The trial, which will be conducted in
Cagliari, Italy, will test the hypothesis that
combination therapy with Desferal (a
chelator administered subcutaneously) and
deferiprone (an oral chelator) is more
effective at removing iron from the heart
than therapy with Desferal alone. (Desferal
is currently the only iron chelation therapy
available to patients in the United States.)
The scientific team conducting the trial,
which will begin this fall and continue for
one year, includes Prof. Dudley Pennell, Dr.
Mark Westwood, Dr. Mark Tanner, Dr.
Beatrix Wonke and Dr. Renzo Galanello.
The team will screen 163 thalassemia
patients, from which they will choose 65 for
the study, with the expectation that 55 will
continue with the trial for the full one-year
period. Half of the patients will use the
combination therapy and half will use
Desferal alone. At the end of the year,
myocardial iron measurements will
determine if there is a difference in the
heart iron concentrations between the two
groups.
The chapters involved in funding the study
have each pledged $5,000 toward this
“I am very excited that CAF’s chapters
have once again demonstrated their
willingness to support projects that are of
great importance to our patients,” says
Frank Somma, national CAF president.
“Cardiac complications related to iron
overload are a major concern for CAF and
for our patients. I believe that this study will
make a significant contribution to the
information concerning combination therapy
and its possible benefit to the thalassemic
community.”
“There has been a great deal of discussion
about the effectiveness of combined
Desferal/deferiprone therapy,” the
presidents of the six chapters said in a
formal statement. “We are pleased to
support this distinguished team of
researchers and hope that the results of
this study will move us closer to more
effective therapies for all those with
thalassemia.”
The presidents of the chapters who are
contributing to the study include Peter
Chieco (Westchester-Rockland), Joseph
Giammalvo (Long Island), Ed Martella
(Suffolk), Angela Padavano (Staten Island),
Matt Stamateris (New Jersey) and Frank
Zito (Queens).
If so, please let us know so that we may make the necessary corrections.
(800) 522-7222.
Thank you.
Cooley’s Anemia Foundation
Florida Has
New Chapter-inFormation
important project. Four of those chapters –
the New Jersey, Queens, Suffolk and
Westchester-Rockland chapters – have
already forwarded funds to the CAF
national office. Two others – the Long
Island and Staten Island chapters – will
fulfill their pledges in the near future.
Are you receiving duplicate copies of LIFELINE at your address?
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Currently about 8 people religiously attend
all meetings and others periodically get
involved. “A lot of patients have shown
enthusiasm about our group,” Lale says,
“but because they’re spread out all over
Florida, they cannot come to the local
meetings/events. That is why we are
developing a website in the hopes of
connecting the Florida patients and
families.”
Lale Gerger, the President of CAF’s new
Florida chapter-in-formation, sums up her
effective recruiting technique like this: “I
tell them, ‘If I have time, EVERYONE has
time!’”
The single working parent of “Emre, a
wonderful eleven-year-old,” Lale is a human
resources manager for a Jacksonville
newspaper who learned about thalassemia
only recently. “My sister, Guler, started to
volunteer her time at an orphanage in
Istanbul (Turkey),” Lale says. There, Guler
met Sevda, an orphan with thalassemia
major who, because she was given her
pump during the day, “was essentially bed
ridden.”
Guler became Sevda’s foster mother (and is
now trying to adopt her). She administers
her Desferal at night, freeing her to flourish
during the day like other children.
“I was doing research for Guler on the
internet when I found
www.cooleysanemia.org,” Lale explains. “I
was thrilled to see the tab on ‘local
chapters’ and clicked on it expecting to find
a group in Florida. I figured my sister could
get together with that group when she came
to visit us. I was disappointed to find none.
Having been in non-profit management, I
decided that I would just have to start one.
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OSIA President Addresses
Thalassemia Conference
That was in August. Now, we have a small
yet very strong board and are working
toward developing this chapter.”
Lale Gerger
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The Florida chapter has already held a blood
drive in cooperation with the
Florida/Georgia Blood Alliance and plans on
doing some fundraisers with local
businesses (such as Dunkin Donuts) to
raise awareness and funds. In addition, the
chapter is contacting local organizations that
serve at-risk populations and wants to
attend at least 2 fairs in the next few
months to raise awareness.
Already the chapter has a business plan and
a set of goals that includes developing a
website, creating a brochure and sending
information to hematology clinics in the
area.
Asked about specific challenges, Lale
mentioned the number of patients and the
need to get more families involved. She
also praised the chapter’s board, which she
calls “its biggest asset. We have Dr. Paul
Pitel whose leadership is invaluable. We
have an incredible strength of experience in
our First Vice President, Lori Linares;
Medical/Patient Services Vice President,
Louise Bergeron; Treasurer Halil Gerger;
Secretary Joyce Harris; and Nominating
Committee Member Teresa Brown.”
CAF congratulates the members of the
Florida chapter-in-formation on their hard
work and dedication and is thrilled that the
thalassemia community has such a valuable
resource in the area.
For more information about the Florida
chapter, contact Lale Gerger at 904-6130097 or [email protected].
Joseph Sciame, National President of the
Order Sons of Italy in America (OSIA),
addressed some 250 parents and
thalassemics at the 11th Thalassaemia
International Federation (TIF) Conference in
Palermo on October 15, 2003. The event
was also the occasion for the 9th
International Conference on Thalassemia
and Hemoglobinopathies at which an
additional 750 doctors, nurses and other
professional throughout the world met at
Citta del Mare in Terrasini, Palermo.
National President Sciame (who is also a
CAF Board member) spoke on “The Role
of Lay Organizations (OSIA) in the Possible
Fund Raising Efforts That Assist
Thalassemia Chapters Worldwide.” The
Conference, attended by citizens of
Greece, Turkey, United Kingdom, Pakistan,
Cypress, the United States, and Italy, to
name a few, provided OSIA with the
opportunity to put forth an agenda of its
charitable activities which have propelled a
substantial increase to thalassemia fund
raising by its members.
In acknowledging the OSIA efforts over the
many years, Sciame stated during the
course of his presentation that “in the
USA, the Cooley’s Anemia Foundation is
the #1 entity for which we of the OSIA
raise monies. We feel our efforts all these
Joseph Sciame
many years have led to increased research
by notable doctors, raised the level of
awareness about this blood disorder and
brought about an extensive networking
system between the OSIA and CAF. We
can all be proud of this activity.”
CAF thanks Joseph Sciame for taking the
time to travel to Palermo and participate in
this important international conference. We
applaud the OSIA for their many years of
enduring support in the battle against
thalassemia.
CAF thanks Dave Bundy for the use of his
photograph of Sabrina-Marie Wilson in the
September 2003 LIFELINE.
I want to help in the fight against thalassemia.
Enclosed is my contribution of
____ $25 ____ $50 ____ $100 ____ $250 Other $ ______
Name
___________________________________________________________________________________________
Address
___________________________________________________________________________________________
City /State /Zip
___________________________________________________________________________________________
Please make all checks payable to the Cooley's Anemia Foundation.
Mastercard ____ Visa _____ Card# ___________________________________________ exp. ___________
Mail to: Cooley's Anemia Foundation, 129-09 26th Ave #203, Flushing, NY11354
All contributions are tax-deductible.
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