Lifeline 2 - Cooley`s Anemia Foundation

Lifel ine
March 2002
Cooley’s Anemia Foundation
Leading
the
Fight
Against
Thalassemia
CAF Efforts Result in Federal Blood Safety Program
As a result of efforts by CAF, the federal
government has approved $2.2 million to
establish a thalassemia-based blood safety
and surveillance program, beginning this
fiscal year.
Roberts of CDC. In addition, the
Foundation remained in close contact with
elected officials who were willing to support
this effort, especially Senator Arlen Specter
(R-PA), Senator Tom Harkin (D-IA),
Congresswoman Rosa DeLauro (D-CT) and
Congressman Jesse Jackson, Jr. (D-IL).
These and other members of the House
and Senate championed our cause to great
effect.
Blood safety is a crucial issue for
thalassemia patients. Their frequent blood
transfusions put them at risk of exposure
to blood-borne pathogens, such as
hepatitis and possibly new variant
Creutzfeldt-Jakob disease (nvCJD).
The new program will also benefit the
population at large by allowing the Centers
for Disease Control and Prevention (CDC)
to rapidly identify potential threats to the
nation’s blood supply. Rapid response to
such threats translates into reduced
exposure and lives saved. In addition, the
program will help in identifying vaccination
recommendations for blood-borne
pathogens and provide new information in
related areas such as transfusionassociated AIDS, hepatitis C, bacterial
contamination and iron overload.
Obtaining funding for blood safety and
surveillance has been one of CAF’s highest
Frank and Alicia Somma testify before Congress
priorities. In March, 2001 CAF President
Frank Somma and his daughter, Alicia,
delivered stirring testimony before
Congress on a number of issues, chief
among them the need to develop this blood
safety program within the CDC. The
reaction was very positive.
CAF followed this up with several important
meetings, including one with Dr. Bruce
Evatt, Dr. Sally Crudder and Beverly
"I'm enormously pleased that the federal
government has recognized the importance
of this issue," says Joseph Giammalvo,
CAF Vice President for Public Policy and
Legislation. "Ensuring the safety of our
nation's blood supply is now acknowledged
as a high priority."
CAF will continue its involvement by
working closely with the CDC on
implementation details and by ensuring
that the new program achieves the most
beneficial outcomes for thalassemia patients.
(For more legislative updates, see page 3.)
contents
News Brief
1
• CAF Efforts Result in Federal Blood Safety Program
Legislative News
3
• Rosa DeLauro: A Voice for Thalassemia on Capitol Hill • Other Legislative Achievements
Board News
5
• Tribute Held for Sam Cervoni
Patient News
6
• Painless Liver Iron Measurement Available to Thalassemia Patients • In Memoriam
• Report on TIF Scientific Conference • TAG Sets Patient / Family Conference • Diet for Thals (Part 2)
Medical News
10
• CAF a Presence at ASH • About L1 • CAF Increases Research Fellowship Grants
• Thalassemia Clinical Research Network Update • Seminar for Doctors • A Series of Small Miracles
Philanthropy News
14
• California Girl Cooks Up Treat for CAF • CAF Benefits from Miracle Day • CAF Annual Spring Gala
Chapter News
14
• Chapter Updates • Interview with Matt Stamateris, New Jersey Chapter President
President’s Message
In February I attended a memorial service for
Salvatore "Sammy" Cervoni. As I listened to
his friends speak about him, I was moved by
the life he led and the obvious, bountiful love
he had for his wife, Mary Ann, and his
daughter, Mary Ann. Sammy worked tirelessly
for Cooley’s anemia patients. His was the
driving force behind Cooley’s patients having
"direct donor" programs available. He began
the highly successful Suffolk chapter.
Notorious for getting more for less, he was
equally renowned for being generous.
Frank Somma
Sammy will be sorely missed. He and others
who began this foundation are a different
breed–men and women who dedicated
themselves to the care and cure of Cooley’s
anemia patients with almost nothing to work
with but their hearts, heads and each other.
Please remember Sammy and all of our CAF
pioneers as you read this issue of Lifeline.
Without them we wouldn’t have the contacts
in Washington to lead Congress into spending
over two million dollars to prevent diseases
passed through the blood. We wouldn’t have
the influence to get the National Institutes of
Health to commit over twelve million dollars
for our Clinical Research Network. We
wouldn’t have a patient services department
to answer questions from concerned patients
and parents, nor TAG to inform them of the
multitude of differences in medication and
care. CAF is involved in so many things, like
medical conferences, legislative influence,
pump repair and distribution, education,
fellowships, patient care and, of course, our
relentless search for a cure.
All of these efforts take a lot of financial
support, and for that we thank our wonderful
chapters and our many contributors. They
also take vision, hard work, organization and
persistence. For that we thank all of the
"Sammy’s" who began this effort so many
years ago with so little yet managed to
bequeath to us so much.
God bless you.
National Executive Director’s Message
Jayne Restivo
As the saying goes, "It’s not how you start, it’s
how you finish." CAF is far from finished, but
looking at the stories in this issue reveals how
far we’ve come since 1954.
reinstated funding for thalassemia programs
(page 3). CAF medical fellows are busy
conducting research into better care and an
ultimate cure for thalassemia (page 11).
Due to our efforts, a federal blood safety and
surveillance program for thalassemia patients
is in place (see cover story). Threats to the
blood supply will now be quickly identified and
eliminated, benefiting both thalassemia
patients and the public at large.
All this has happened because everyone
involved with CAF has made it happen.
The money from individual donors, the dollars
raised at chapter dinners and golf outings and
fashion shows–all of that giving on a local
basis has an impact that reaches far beyond
each community. The money raised in
Massachusetts or Staten Island produces
benefits for ALL thalassemia patients.
The Thalassemia Clinical Research Network,
continues to make progress (see page 11). Its
existence proves that the government is
paying increasing attention to the problems of
thalassemia patients.
The SQUID machine (page 6) is making
painless liver iron measurement available,
sparing patients the discomfort of a biopsy.
The Maternal and Child Health Bureau has
We are a relatively small foundation, but
thanks to the dedication of our members, we
have an impact disproportionate to
our size.
Thank you.
statement of purpose
EXECUTIVE COMMITTEE
Frank Somma
Cammie Brandofino
Terri DiFilippo
Diane Kamble
President
1st Vice President
Treasurer
Secretary
Nunzio Cazzetta
Amy Celento-Stamateris
Peter Chieco
Dr. Alan Cohen, MD
Ralph Colasanti
Robert Ficarra
Joseph Giammalvo
Richard Mancino
Concetta Paradiso
Dr. Revathy Sundaram
Jayne Restivo
Craig Butler
National Executive Director
Lifeline Editor
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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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OTHER LEGISLATIVE
ACHIEVEMENTS
In addition to the establishment of the
blood safety and surveillance program at
the CDC, CAF continued working on a
number of other legislative projects in
2001.
Thalassemia Clinical Research Network–
In 2000, CAF was instrumental in
persuading the National Heart, Lung and
Blood Institute (NHLBI) to allocate $12.5
million for the creation of a Thalassemia
Clinical Research Network (TCRN).
The Network brings together the top
doctors and researchers in the thalassemia
field to help speed research, develop
common protocols and procedures and
allow thalassemia patients faster access to
new therapies. CAF is in constant contact
with the TCRN and is working diligently to
ensure that funding will be continued
beyond the first five years.
Maternal Child and Health Bureau
Thalassemia Funding–For several years,
the Maternal and Child Health Bureau
(MCHB) has provided funding for programs
that benefit thalassemia patients at three
U.S. hospitals. In 2001, the MCHB
announced plans to discontinue this
funding, prompting CAF to mount a
campaign to reverse this decision. With
the help of Representatives Rosa DeLauro
(D-CT) and Jesse Jackson, Jr. (D-IL),
CAF was able to persuade MCHB to
reinstate this funding (a total of $1 million),
which supports trait screening and
prenatal/postnatal services to trait
carriers and their children.
National Institute of Diabetes, Digestive
and Kidney Diseases Programs–CAF
remains in close contact with officials at the
National Institute of Diabetes, Digestive
and Kidney Diseases (NIDDK). The
NIDDK’s Director, Dr. Allen Spiegel, was a
guest speaker at the 2001 CAF National
Board Meeting, at which he announced
new research initiatives in iron chelation
and iron measurement, which total more
than $1.5 million.
CAF wishes to acknowledge the splendid
work of Lyle Dennis and CavarocchiRuscio-Dennis Associates in advising the
foundation on legislative matters.
Rosa DeLauro:
A Voice for
Thalassemia on
Capitol Hill
Congresswoman Rosa DeLauro,
who has represented
Connecticut’s third district
in DC since 1990, is one of the
nation’s leading advocates on
behalf of thalassemia patients.
As a member of the House
Appropriations Committee and
the Labor-Health and Human
Services-Education
Subcommittee,
Congresswoman DeLauro
is able to push for legislation of
importance to thalassemics,
such as establishing the
Thalassemia Clinical
Research Network.
A survivor of ovarian cancer, Congresswoman DeLauro is one of Capitol Hill’s
leading lights on health care issues and is
also well known for her interest in
improving public education and helping
working families. WASHINGTONIAN
Magazine deemed her the House of
Representative’s top "Workhorse" in 1998
and 2000, and she has been honored by
such organizations as the Anti-Defamation
League, the National Organization of Italian
American Women and the United States
Marine Corps.
The Congresswoman graciously consented
to take time out from her busy schedule to
answer the following questions.
When and how did you first become aware
of thalassemia?
Actually, the Foundation brought the issue
of Cooley’s anemia to me. They knew of
my interest in health care and my record
regarding children and thought we might be
a good fit. They were right and we have
worked well together ever since. That was
about four years ago, when I first became a
member of the subcommittee that funds
medical research.
Do you have a "personal" connection to the
disease (i.e., do you have a friend or family
member who has thalassemia)?
No. As an Italian-American, I was aware of
the disease–although I certainly did not
know as much about it as I now do.
You have been a consistent champion of
thalassemia patients in the House. For
example, your support was crucial in
establishing the Thalassemia Clinical
Research Network, as was your support of
restoration of MCHB funding for
thalassemia programs. Can you tell me
more about your role in these projects or in
other thalassemia-related projects?
For up-to-the-minute news
about thalassemia-related
issues, visit our website,
www.cooleysanemia.org
Cooley’s Anemia Foundation
3
invasive. Finally, the CAF needs to continue
its strong and effective advocacy to make
sure that your voice continues to be heard
–something I know you intend to do.
Beyond the Research Network, what kind
of government-supported or governmentinitiated projects (general or specific) do
you think thalassemia supporters should be
focusing on in the coming years?
In both cases, I did what members of
Congress do to influence public policy. I
questioned government officials when they
testified before our committee. I wrote
them letters. I sponsored Committee
Report language that encouraged them to
take the appropriate steps. And, of course,
I did it all with the support and assistance
of the Cooley’s Anemia Foundation.
Why have you become such a champion
for thalassemia patients? What moves you
to put so much effort into their cause?
Because it is so important. On a general
level, of course, I worry about sick children
and what they have to go through. But the
stories of thalassemia patients are so
compelling–the blood transfusions, the
nightly iron chelation, the developmental
issues–that I could not consider it to be just
another disease.
The establishment of the Research
Network is a major step forward for
thalassemia patients. What further steps do
you think need to be taken to ensure its
existence beyond the initial five years?
First is funding. We need to ensure that
NIH continues to have enough resources to
support the program. But the second key
issue is not up to Congress. It is up to the
scientists. We need some real, honest-togoodness breakthroughs. We need to
reduce dependence on transfusions, make
chelation less burdensome, and make iron
measurement more accurate and less
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Cooley’s Anemia Foundation
I believe that research is the key.
The government needs to fund it, but the
researchers themselves need to focus on
it. I also believe we need to continue and
enhance our focus on blood safety. We
have the safest blood supply in the world,
but with thalassemia patients receiving
transfusions every two weeks, we need
special efforts to ensure their safety. CDC
has a lot on their plate right now, but this is
something they need to be doing in much
the same way as they have done for
hemophilia.
(Editor’s Note: This interview was
conducted before funds were approved
for CDC’s blood safety program).
What do you see as the biggest obstacles
to increasing funding and/or government
attention to thalassemia? What do you
think can be done by thalassemia patients
and organizations like CAF to overcome
these obstacles?
Rare diseases always have a problem
competing for attention against the more
common, complex diseases. However, the
thalassemia community has done a
remarkable job. Your influence–both now
and historically–far exceeds that of most
organizations of comparable size. Your key
advantage, of course, is a core group of
dedicated volunteers who have committed
themselves and their lives to finding a cure
for this disease.
Medical costs for thalassemia patients are
considerable, due to the need for
frequent transfusions, nightly chelation
therapy, regular iron measurements, etc.
Many thalassemia patients must depend
upon Medicaid to cover these expenses,
but to keep this Medicaid coverage they
must sacrifice jobs that could move them
into a higher income bracket and improve
the quality of other areas of their lives.
What do you think can be done to enable
thalassemia patients to keep lifegiving
medical coverage yet be able to improve
their general financial standing?
About two years ago, Congress passed
legislation that would enable disabled
patients to retain their coverage when they
go to work. We need to take a careful look
at that law, specifically at the question of
how successfully the states are
implementing it. If it needs to be improved
or expanded, we should do it. Our society
should be about encouraging and enabling
people to be happy, productive and
successful citizens whether they have a
chronic disease or a physical or mental
disability.
Do you have any thoughts on what can be
done to increase the awareness of
thalassemia among the general public?
Again, this is very hard, as you are
competing for attention against some
widespread disorders. As a cancer survivor,
I can say quite openly that everyone knows
someone who has or has had cancer. Not
everyone knows about thalassemia. As a
result, I think that you have to work smart
and be smart, targeting your efforts where
they will have the maximum positive impact
and ignoring those issues that are only
tangential to your mission. Again, however,
I believe that CAF has done far greater
work than anyone could have expected of
you when it was founded.
Is there anything else you would like to say
to our patients or about thalassemia and/or
your work?
Let me just conclude by thanking all of
you in the Cooley’s Anemia Foundation
for giving me the opportunity to help.
I am so proud of all of you and what you
have accomplished. Your young people
are such inspirations and such models
of courage and tenacity; it is just
remarkable. Please know that I will
continue to work with you and support
your efforts, as long as you will have me. I
just hope you will invite me to the big
announcement ceremony when the cure
is found and we can put this terrible
disease to rest.
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Tribute Held for Sam Cervoni
Over 150 people gathered
together on February 19 to
share their memories of
Salvatore "Sammy" Cervoni,
the longtime CAF board member
who passed away on August 28,
2001.
Calling Mr. Cervoni "the inspiration that
kept the Suffolk chapter focused from its
inception," Suffolk chapter President Ed
Martella arranged this special event, which
took place at the Watermill Restaurant, in
Smithtown, NY.
the Remembrance Gathering. "Over the
years he raised hundreds of thousands of
dollars for research. He has a special place
in our hearts and we will honor him with a
special place in the Suffolk chapter."
The Suffolk chapter produced a special
journal with pictures of Mr. Cervoni from
the inception of the chapter. Also featured
were special memories from people who
knew him during his decades-long work on
behalf of thalassemia patients. Some of
those memories are featured below.
Tony Laurino, long time fund raiser for
Suffolk, praised Mr. Cervoni's ceaseless
dedication to fighting thalassemia. "He told
everyone he met about Cooley's anemia,"
Laurino said. "He sold a raffle ticket, a
"Everyone who met Sammy associated him
with Cooley's anemia," Martella stated in a
letter inviting Mr. Cervoni’s many friends to
We talked for hours about "the old days"
when the chapter was first started. We shared
war stories about our teen years and our
parents. We explored various fund raising
events. He expounded about blood
transfusions, what the patients felt and how
we would find a cure.
Saturday is a lost day now. There is a void in
my heart and in my life. Having Sammy as a
friend was more than "good ‘nuff".
–Tony Laurino
"Sammy devoted years of his life to helping
thalassemia patients in every way
possible," CAF national President Frank
Somma recently said. "His passion and
dedication are greatly missed by everyone
at CAF."
Sammy being Sammy, and not wanting me to
feel bad, said "Don’t worry, I saw a pizza place
up the block".
Moral of the story: you could take Sammy
anywhere as long as you had pizza for him.
We miss your presence but have our
memories.–Nunzio & Rose Cazzetta
His words at our first meeting have proven
true and extremely rewarding for my family.
He showed me how a man should lead his
family in this battle, and how we can make a
difference.
My most cherished memory is our Saturday
lunches. I would go to Sammy’s so he could
sign checks. We had good Italian bread and
cold cuts with coffee from his famous
thermos. I always asked if the coffee was
made that day or the day before. Sometimes
Sammy would say "It’s from last night but this
thermos keeps it good ‘nuff, Ant".
In addition to serving as the Suffolk
chapter's Treasurer from its inception in
1971, Sam Cervoni was a valued member
of the national Executive Committee of
CAF. He served as the National Treasurer
and as National Vice President in charge of
Fundraising for over 20 years and also lent
his talents to the national By-Laws
Committee and the national Blood
Committee.
answered, "That’s all we serve, we are a clam
house!" Sammy remained calm and looked at
me and said, "I don’t eat fish".
Shortly after my daughter Michelle was
diagnosed with Cooley’s anemia, I became
involved with the foundation. It was at my first
board meeting in 1990 that I met Sammy. He
introduced himself to my wife and me and told
us that our daughter was going to live a good
life. At that time, we only knew despair. I
believed him, though, because of the
conviction he had and because of how well his
daughter Mary Ann was doing.
Sam, you will be sorely missed but never
forgotten!–Peter Chieco
journal ad, a table for a dinner dance or
anything else to everyone who walked into
his office. Some years he sold 300 or 400
tickets to the Suffolk dinner dance."
Cherished
Memories
(Nunzio Cazzetta remembers talking a
reluctant Sammy into going to dinner at the
world famous Umberto’s Clam House in Little
Italy.)
Upon entering, we were seated and given
menus. As was customary, Sammy wanted to
know what the specials were. The waiter said,
"None." This surprised Sammy. Next Sammy
asked when are they bringing out the bread.
The waiter said, "We don’t serve bread."
Sammy’s response was "What kind of Italian
restaurant is this, they don’t serve bread?"
Now I’m getting upset thinking about the great
review I gave Umberto’s. Finally, the last shoe
dropped. Sammy called the waiter and said,
"All I see on this menu is fish." The waiter
He rarely showed anger. He never was
flustered. At least he never showed these
emotions. He was always in control. He always
had another solution. He recognized and
acknowledged your ideas. He wasn’t an
egoist. Maybe that was his genius.
–Peter Mulieri
Sammy always had something good to say
about people, even if they hurt him. He would
say something like this: "They just don’t
understand what it’s all about."
–Danny Tantillo
Sam was a sweet man, a joy to be with. Let us
memorialize him by rededicating ourselves to
finding a cure for Cooley’s anemia.
–Connie Paradiso
Your job on earth was to take care of your
family, friends and the Cooley’s Anemia
Foundation. You have succeeded in your
earthly jobs. I am sure you are still working
very hard in heaven, watching over everyone.
–Debra A. Williams
Cooley’s Anemia Foundation
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In Memoriam
We regretfully report the loss of
Cooley’s anemia patient
Robert Barrone
Painless Liver Iron Measurement
Available to Thalassemia Patients
As all thalassemia patients know,
maintaining an accurate measurement of
their iron content is vitally important to their
future health. Serum ferritin tests are a
common–and invaluable–method of
measuring "general" iron levels, but they
are not sufficiently accurate when it comes
to assessing the actual organ storage of
iron.
For years, the most accurate method of
measuring organ iron levels was the liver
biopsy, an invasive and inconvenient
procedure in which a small piece of liver
tissue is removed for examination. Despite
the fact that many doctors recommend
regular biopsies–as often as once per
year–many thalassemia patients are
reluctant to undergo the procedure, which
sometimes requires a short hospital stay.
Now, however, there’s an easier,
noninvasive alternative–one which
thalassemia patients can take advantage of
in 2002. This alternative–called SQUID (for
Superconducting Quantum Interference
Device)–determines liver iron content by
measuring magnetic fields. The experience
is much less inconvenient than a biopsy–
roughly comparable to undergoing a CAT
scan or MRI.
The SQUID technology, which the National
Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK) has been
instrumental in funding, is currently
available only at Columbia Presbyterian
Medical Center in New York City, although
Children’s Hospital Oakland is making
arrangements to obtain a machine in the
near future.
and extend our sympathies to
his family and friends.
CAF has made arrangements with
Columbia Presbyterian–and with Children’s
Hospital Oakland when it obtains its
machine–for thalassemia patients to have
access to the SQUID for free iron
measurements.
Patients who wish to participate must be at
least 5 years of age and able to lie quietly
during the ten-minute procedure.
Patients with pacemakers, artificial joints,
metal staples or indwelling catheters are
not eligible.
Patients with dental braces would need to
have them removed prior to the procedure.
If you are a thalassemia patient and wish to
participate, please get permission from
your doctor and then contact Eileen Scott
or Wanda Febus at 800-522-7222.
Report on TIF Scientific Conference
The Thalassaemia International
Federation (TIF) convened its
8th International Conference
on Thalassaemia and the
Hemoglobinopathies in Athens
from October 18 through the 21.
Although attendance was affected by the
uncertainties created by the September 11
terrorist attacks in America, TIF Scientific
Coordinator Dr. Androulla Eleftheriou
reported that "the organizing and
scientific committees of the Conference
exerted tremendous efforts under the
circumstances and the outcome of the
Conference in the end was very successful."
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Cooley’s Anemia Foundation
International experts spoke on a
variety of issues, including molecular
biology; epidemiology and prevention of
beta-thalassemia major; genotype and
phenotype correlations; clinical
management; and psychosocial issues.
An update on the status of gene therapy
and new data on other therapeutical
interventions including bone marrow
transplantation, use of hydroxyurea and
butyates were also presented. Information
on the clinical care of sickle cell disease
and other hemoglobinopathies was
included in the program to address the
needs of scientists coming from
countries with high frequency of these
hemoglobinopathies.
Unfortunately, TIF postponed the 10th
International Thalassemics and Parents
Conference as a result of the September
11 world political crisis. However, patients
and parents who chose to participate in the
Conference on Thalassaemia and the
Hemoglobinopathies enjoyed free
registration, and special arrangements
were made by the organizers and TIF to
accommodate their needs as effectively
as possible.
TAG Sets 2002 Patient/Family
Conference
The Patient/Family Conference is one of
TAG’s most eagerly-anticipated and
valuable activities. Open to patients,
parents, siblings and spouses, the
Conference enables people with an
intimate experience of thalassemia to
gather valuable information, ask questions
and share common problems and victories.
Although some specific details are still
being finalized, the basic schedule for the
Conference is as follows:
CAF’s Thalassemia Action Group (TAG)
has announced plans for its 2002
Patient/Family Conference, scheduled for
April 5-7 at the Renaissance Airport Hotel
in Philadelphia.
CAF's Desferal Q&A booklet
is available to all patients.
Friday, April 5
Participants arrive at Renaissance Airport
Hotel and check in with the Conference. A
cocktail reception will be held that evening
to allow Conference attendees to get to
know each other.
TAG President Ralph Colasanti
Saturday, April 6
A continental buffet breakfast is followed
by sessions focused around specific topics:
Bone Marrow Transplantation/Cord
Blood/Stem Cell Research
Cardiovascular Disease
Endocrinology
Infectious Diseases
Special Children’s Session
Doctors with experience in each field will
head these sessions, but the patients and
family members set the agenda by asking
questions relevant to each topic. This
ensures that participants can get specific
answers to questions that are of personal
importance to them.
Lunch is followed by an extended session
devoted to psychosocial concerns. All are
encouraged to air problems they have
experienced, offer suggestions on how to
deal with these problems and talk about
their personal triumphs.
To receive a copy, please call
Wanda Febus at 800-522-7222
or 718-321-2873
A wonderful dinner dance wraps up the day
and allows participants to cement
friendships they developed during the day.
Sunday, April 7
Time to check out–after making sure
you’ve gotten all those addresses and
phone numbers you wanted to get.
TAG President Ralph Colasanti says, "I
hope that every thalassemia patient and
their family members will make a real effort
to join us this year. And I really encourage
anyone who has NOT attended in the past
to do so in 2002. So many people talk
about how incredible these Conferences
are, and how they literally have changed
their lives, I hope we meet a bunch of new
friends in Philadelphia and catch up with
some of our old relationships."
For more information, please contact the
CAF office at 800-522-7222 or Ralph
Colasanti at [email protected].
International
Thalassemia Day
is
May 8
Cooley’s Anemia Foundation
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DIET FOR THALS (PART 2)
(This is the second in a series of articles about appropriate food choices for people with Thalassemia).
Antioxidants in Food
by Dr. Dona Hileti-Tefler
Paradoxically, oxygen is
essential for life but is also
lethal! This is because normal
oxygen molecules can convert
into different chemical forms
known as "free radicals."
When the activity of free
radicals is harnessed and
controlled, they have important
uses in the body. Uncontrolled
free radicals, however, can do
great damage and lead to
disease.
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Antioxidants are important in any diet,
because as their name suggests, they
prevent oxidative damage in the body. In
doing so, they play an important role in the
prevention of diseases such as coronary
heart disease and cancer.
In thalassemia, because of the excess iron
in the body, there is a higher risk of
oxidative damage. In this article, I will
concentrate on the four main antioxidants:
vitamin E, vitamin C, carotenoids and
flavonoids.
Vitamin E
Vitamin E is the most important dietary
antioxidant. Several studies have found that
many thalassemics have lower levels of
vitamin E in their blood compared to nonthalassemics. This could be either because
thalassemics do not take as much vitamin E
in their diet or because their needs are
higher. In many studies, when vitamin E
was given as a supplement, vitamin E levels
in the blood improved. However, even if
your doctor or dietician recommends that
you take a supplement, the best way for
any vitamin to enter your body is through
your food.
Vitamin E is fat-soluble, which means that it
is present in foods that have a high amount
of fat. The best sources of vitamin E are
vegetable oils (olive, safflower, palm and
soya oil). The best one to use is probably
olive oil because the type of fat it contains
can help to prevent heart disease.
In Mediterranean countries where olive oil
is used a lot (Greece, Portugal, Spain and
Italy), heart disease is lower than in
northern Europe.
Remember, however, that the vitamin is
destroyed slowly with frying. Therefore, the
best way to get the most out of your olive
oil is to add it to foods towards the end of
cooking or even after it is cooked, as a
dressing. Olive oil mixed with lemon, for
example, can make a delicious dressing for
fish, chicken, boiled vegetables and salads.
Being Greek Cypriot myself, I can give you
many recipes which feature olive oil as the
main ingredient! You can probably do better,
however, using your own imagination.
Choose the extra virgin olive oil if you like
the intense flavor and tend to use it as a
dressing, or experiment with more refined
varieties if you want to use it for cooking,
making cakes, etc. Ghee also contains
vitamin E but since olive oil has additional
health benefits, you may like to try using it
in cooking.
Vitamin C
You might remember from my previous
article that vitamin C increases the
absorption of non-meat iron. Therefore,
although vitamin C is a very powerful
antioxidant, I will not advocate the use of
many foods containing vitamin C in
combination with foods that are high in nonmeat iron. This is important for those with
thalassemia intermedia who are not
regularly transfused.
Remember that non-meat iron is widely
distributed in the diet, present in eggs,
chocolate, cereals, vegetables, fruits, roots
(potatoes, parsnips), beans and lentils. In
the United Kingdom, several foods are
fortified with iron, such as breakfast
cereals, wheat flour and bread, although
this may not be the case in other countries.
Vitamin C is mainly found in fruit, fruit
juices and vegetables. It might be better to
have your piece of fruit or glass of fruit
juice on its own, in between meals and not
during or immediately after your meal. As
health professionals, we recommend
people eat 5 portions of fruit and
vegetables daily.
Other sources of vitamin E are dairy
products, cereals, nuts, eggs and meat.
Dairy products are particularly good to
include in the diet not only because they
contain vitamin E but also because they
inhibit iron absorption from our food into
our bodies and also because they contain a
lot of calcium which can help to prevent
osteoporosis (weak bones). You can try to
use milk in cooking or to have a glass of
milk with your meal. Skimmed milk has
lower levels of vitamin E than full-cream
milk, although the amount of calcium
is the same.
Examples of what constitutes one portion
are: a glass of fruit juice; a piece of fruit
such as an apple, pear, banana, orange,
half a grapefruit, one tomato; a helping of
vegetables such as carrots, courgettes,
French beans or a small salad. Vitamin C is
water-soluble, so if vegetables are boiled it
will leak out in the water. Light steaming
preserves the vitamin better. Cooked
vegetables with olive oil and lemon can
make a very tasty snack or a light meal.
Vitamin E and vitamin C work better when
they are together, so remember to fuel
your vegetables with olive oil!
Carotenoids
Common dietary sources of carotenoids
are carrots, yellow squash, corn, tomatoes,
papaya, oranges and dark-green leafy
vegetables. Again, most of these foods are
high in vitamin C and therefore the same
caution applies as above. It is worth
pointing out that the absorption of
carotenoids from the diet is much higher
when the food contains fat or oil. So keep
adding that olive oil! Carotenoids can be
destroyed at high temperatures so keep
the cooking temperature low and the time
short if you can.
Flavonoids
These are found in tea, red wine, fruit and
vegetables. What better excuse to include
a glass of red wine with your meal! If it is a
more sober occasion, have your meal with
a cup of tea! (I am sure the English
amongst you are now rejoicing.) It took my
English husband several years of hard work
and gentle persuasion to convince me to
have tea more often than once every three
months (usually when I have a cold). Tea
will not only give you lots of antioxidants,
but it will also inhibit the absorption of iron
from your food, especially if you take it with
milk. Try to have several cups of tea daily.
Remember that we need about 8 glasses
of fluid daily to be well hydrated.
Dr. Dona Hileti-Telfer is Senior Dietician at the Great Ormond Street Hospital for Sick
Children in London. This article is reprinted from Thalassaemia International Federation
Magazine and from the UK Thalassaemia Society newsletter.
Cooley’s Anemia Foundation
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About L1
CAF a Presence at ASH
Dr. Antonio Piga, Ralph Colasanti and Jayne Restivo at ASH
Representatives from CAF joined more than
16,000 medical professionals at the 43rd
American Society of Hematology (ASH)
convention in Orlando from December 7
through 11. Because thalassemia is a blood
disorder, doctors who treat thalassemia
patients or do research on thalassemia
issues tend to have a background in
hematology; therefore, the ASH convention
is of special importance to CAF.
"The ASH convention is a great opportunity
for CAF to interact with those in the
medical profession that have a real effect
on the direction of CAF," said Wanda
Febus, CAF Patient Services Coordinator.
"We’re able to engage in a valuable
dialogue about the issues affecting patients
and their caregivers. We create long lasting
relationships with these professionals that
in turn benefit our patients."
Peter Chieco, CAF’s Vice President of
Medical Information, was also positive. "It
was extremely worthwhile to attend and see
how our hard earned research dollars are
working," he stated, referring to reports
from past and present CAF Medical
Fellowship recipients. "Gathered together in
one place are doctors, drug companies,
government officials and many other key
components. It’s an opportunity to develop
a synergy that can work to our benefit."
Much of the information available at the
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convention concerned potential oral iron
chelators, such as Apotex’s L1 and
Novartis’s ICL670A. Diane Kamble, a
member of both the CAF and TAG boards,
was especially interested in these
developments. Because some chelators
are currently in various trial stages, their
ultimate viability and usefulness have not
yet been determined; still, Diane was
encouraged by what she learned at ASH.
For example, Diane reported that a poster
presentation by Dr. Robert Grady and Dr.
Patricia Giardina indicated that a treatment
routine combining both Desferal and L1
seems to have an additive effect on iron
excretion beyond what is achieved when
either one is used alone.
"This is potentially very exciting," Diane
added. "A combination treatment could
provide a means of tailoring a chelation
regimen to the individual needs of each
patient, as well as increasing the number of
options available to every patient."
Regarding ICL670A, Diane said that a
preliminary study by Novartis shows
promise in its ability to remove iron from
the body.
"Of course, Novartis has only conducted
early trials so far," Diane said, adding that
the patient base was very small and the
length of the trial quite short. "So we have
to wait for further trials to get a better
picture of its effectiveness."
Apotex Research Inc. is in the final
stages of submitting a new drug
application (NDA) to the Food and Drug
Administration (FDA) for approval of the
orally active iron chelator, Ferriprox
(deferiprone), also known as L1. The
company will submit its NDA this year.
The NDA submission is the culmination
of extensive clinical trials conducted
since 1993 in Europe, the United States
and Canada. Over 350 patients
participated in the trials, some of them
having been treated with Ferriprox for
over 8 years.
Ferriprox was approved in Europe in
1999 for the treatment of iron overload
in patients with thalassemia major for
whom deferoxamine therapy is
contraindicated or who present serious
toxicity with deferoxamine therapy.
Apotex has continued to evaluate the
safety and efficacy of Ferriprox and
believes the data obtained from these
studies demonstrate the long-term
safety and efficacy of deferiprone.
Under normal circumstances, the FDA
review process averages a year from
the date of submission. However, the
FDA may decide to provide an
expedited review for the drug. Expedited
review is provided when there is an
urgent need to provide an alternative
lifesaving treatment to patients. FDA
approval for Ferriprox is required for the
drug to be routinely available to patients
in the United States.
(For information about ICL670A, see
the June, 2001 LIFELINE.)
CAF National Executive Director Jayne
Restivo was also encouraged by the
reports on oral chelator development.
"There’s a lot of interest and a lot of activity
in this area," Jayne said. "While it is not
possible to project a date, I feel confident
that the day when an oral chelator has
been developed and approved for use by
our patients is closer than ever."
Summing things up, Wanda stated that
"getting the larger medical community
involved and challenging them to create
awareness in their own communities is a
big part of leading the fight against
thalassemia. ASH helps us to do that."
"At this point we don’t know whether an
oral chelator would take the place of or be
a supplement to current treatment," Jayne
added. "But because compliance is difficult
for so many, CAF believes that patients
need to have different options available."
Other CAF members at ASH included
National President Frank Somma; TAG
President Ralph Colasanti; CAF board
members Dawn Adler and Robert Ficarra;
and Special Projects Director
Jo Ann Barbella.
Thalassemia Clinical
Research Network Update
One of the primary functions of the
Network is to develop thalassemia-related
protocols. The Network’s three initial
protocols are a cross-sectional study of
osteoporosis in thalassemia, a trial of a
drug used to treat osteoporosis, and a trial
of combination therapy for hepatitis C. The
Network hopes to get these protocols in
the field soon.
CAF Increases Research
Fellowship Grants
Directors subsequently approved the five
individuals below:
–Bruno Dalle received his Ph.D. in
"Therapeutiques Biotechnologiques" from
the University of Paris in France. Currently
a postdoctoral fellow at Harvard/MIT
working with Dr. Philippe Leboulch, Dr.
Dalle’s CAF fellowship will focus on gene
therapy.
For each protocol, a principal investigator
(PI) specifies a topic and how it would be
studied. This is done with the help of other
PIs, experts in the fields being studied
(endocrinologists, bone doctors,
hepatologists), and statisticians and others
at the New England Research Institute.
Every detail must be thought out, including
treatment schedules, necessary tests,
monitoring of adverse events, budgets,
patient confidentiality and consent
procedures.
The Network’s other ongoing project is the
Registry. The goal of the Registry is to
enroll most of the thalassemia patients in
North America and to provide the much
needed data on this population. The
Registry will describe the incidence of
thalassemia and explore the range of
treatments and complications or
thalassemia patients. The Network began
enrolling patients in June of 2001, and
currently has 200 patients in the database.
The Network is funded by the National
Heart, Lung and Blood Institute.
Seminar for Thal Doctors
–Michael S. Boosalis received a Ph.D. from
the University of Southern California in
1989. He is currently a postdoctoral fellow
with the Cancer Research Center at the
Boston University School of Medicine. His
research fellowship is in the area of fetal
hemoglobin.
Recognizing the growing expenses
associated with medical research, CAF has
increased the amount of money it will
award to individual recipients of its Medical
Research Fellowships. Applicants awarded
new two-year fellowships in June of 2002
will receive $40,000 for each of the two
years; previously, the amount was $30,000
per annum.
CAF has been funding research for over
forty years. From its inception, the
foundation recognized it must make an
extraordinary commitment towards
recruiting doctors to pursue a career
investigating thalassemia, especially due to
the relatively small patient base in the
United States.
CAF and New York City Presbyterian
Hospital will hold a Continuing Medical
Education (CME) seminar for doctors on
April 26 and 27. Sponsored by Novartis
Pharmaceuticals and entitled "Thalassemia
Update: Current Management and Future
Therapies," the CME will inform physicians
about the treatment complications and
issues in managing patients with
thalassemia.
Today, CAF offers medical fellowship
awards to qualified applicants. CAF fellows
represent the most outstanding research
laboratories and cover all areas of
thalassemia research including iron
chelation, fetal hemoglobin stimulation,
gene therapy, bone marrow transplantation,
organ iron measurement, cardiac and
endocrine complications of iron overload,
hepatitis C and osteoporosis.
The CME will be held at NYC’s Midtown
Executive and Chemists’ Club.
Space is limited. For a registration form,
call 800-522-7222.
Last year, the Scientific Review Committee
of the CAF Medical Advisory Board (MAB)
recommended Fellowships to five eminently
qualified doctors. The CAF Board of
–Tobias Neff received his degree from the
Medical School of the Johann-WolfgangGoethe University of Frankfurt a.M. in
Germany. Currently a senior fellow at the
University of Washington, he will be
conducting research in gene therapy.
–Saovaros Svasti earned a Ph.D. from
Mahidol University in Thailand. She is a
postdoctoral associate at the Lineberger
Comprehensive Cancer Center and will be
conducting research in gene therapy.
–Shigang Xiong has a Ph.D. in Oncobiology
from Chinese Academy of Medical
Sciences/Peking Union Medical College.
He is currently a postdoctoral research
associate at the Keck School of Medicine,
University of Southern California, and will
be exploring the role of iron in liver
damage.
Dr. Alan Cohen, head of the MAB and a
former CAF Fellowship recipient, has
stated that "the Fellowship program of the
Foundation has been extremely important.
I have been particularly gratified by the
development of careers in Cooley’s anemia
by physicians and scientists who were
awarded CAF fellowships early in their
training."
The recipients of 2002-2003 fellowships
will be announced in early June.
Cooley’s Anemia Foundation
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The Xyloportas Family: Sophie, Teddy, John, Marci and Mia
"A Series of Small Miracles"
John and Sophie Xyloportas
consider their lives "a series of
small miracles." They have three
beautiful children, two of whom
were born with beta
thalassemia major. Because of
good fortune and the
selflessness of their third child,
both of these children are
among the small but growing
number of patients to be cured
of thalassemia.
"When Mia was born," Sophie says,
referring to their oldest daughter, now
eleven, "New Jersey had just initiated a
requirement that all babies be tested for
sickle cell anemia. When her results came
back, they could tell there was something
there but weren’t sure what." Within
eleven weeks, Mia had been diagnosed
with thalassemia and the Xyloportases
began learning about the disease and how
it would affect their family.
Then, when Mia was about a year old, John
had what he describes as a vision. "We had
just been to Astoria to visit an icon of St.
Irene that was tearing. Soon after, a woman
appeared in our room. She was gliding a
little way off the floor rather than walking,
and she was holding a basket and smiling.
There was no evidence of the room in back
of her; it was as if I were looking out at the
open sky, and she was surrounded by a
halo of twinkling lights.
"I was speechless, really scared stiff at
the time, but when it was over, I knew
that everything was going to be alright
with Mia."
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Cooley’s Anemia Foundation
Two weeks later, Sophie discovered that
she was expecting. When their second
daughter was born, they named her
Marcella Irene, after the saint in John’s
vision–the patron saint for women who
wish to become pregnant.
Marcella–now ten years old and usually
called Marci–was born with healthy red
blood cells. She also was born with bone
marrow that was a perfect match for that of
her older sister, which meant that there
was a possibility Mia could be cured of
thalassemia. After discussing bone marrow
transplantation (see sidebar) with Dr.
Patricia Giardina and Dr. Farid Boulad, the
Xyoloportases decided to go ahead with
the procedure once Mia was old enough.
In April of 1995, as Mia was turning five,
she entered the hospital for ten days of
treatments. She underwent chemotherapy
every 4-8 hours, which caused severe
nausea and hair loss. "My mom was more
upset about the hair than I was," she says,
explaining that she liked to pull it out in
clumps and toss it around her room.
After the infusion of bone marrow, Mia had
to be immunosuppressed. No children were
allowed near her and those few adults who
About Bone Marrow
Transplantation
could see her had to be masked, gowned
and gloved. Her mother stayed with her in
the hospital and her father came at every
chance.
Three weeks after the transplant, Mia
experienced septic shock and there was a
very real danger that she would die. But
she pulled through and came home on
June 2.
Once home, she was still restricted. "The
first 100 days are critical," Sophie says, "so
you have to be very cautious. We were
cautious for the first six months, actually."
This meant that Mia was kept
immunosuppressed for that period, with no
pets, limited visitors and no raw food.
"Even fruits and vegetables," John says. "If
she wanted an apple, it had to be
microwaved first."
In the midst of all this activity, Mia and
Marci’s brother, Teddy, was born. Now six
years old, he was diagnosed in utero with
thalassemia. Against the odds, it turned out
that Marci’s marrow was also a perfect
match for Teddy.
When Teddy underwent his BMT in
December, 2000, there had already been
significant advances made. Whereas Mia
was in the hospital for about seven weeks,
Teddy was only in for a month. And
fortunately, Teddy did not suffer any
frightening complications such as his
sister’s septic shock.
Both Mia and Teddy have very positive
memories of their experiences; Teddy
especially liked being able to make a large
model of a tiger skeleton in his room.
However, they both missed the friends and
family members that they couldn’t see. "I
remember one time getting to look out my
hospital window and waving at Marci down
on the street," Mia says. "That was as
close as she could get."
"It was really hard on Marci," Sophie says.
"She was only 3 1/2 when Mia was
treated, and suddenly she didn’t have her
mother or her sister," John adds. "She
cried herself to sleep just about every
night."
Marci may have been sad at the time, but
she was glad to be a donor for her brother
and sister. "It wasn’t a difficult decision,"
she says. "I knew that if I could help my
brother and sister, then I wanted to." She
also has a couple of keepsakes from Mia
that she treasures–a bracelet that Mia
wove for her during her stay at the hospital
and a special "teddy mouse" that Mia had
received as a gift but wanted Marci to
have.
"I’m very thankful," Mia says about her
sister, "even though we fight sometimes!"
And Teddy is very thankful, too. "The
Desferal hurt a lot," he says. "It was bad."
"We went into this blindly," Sophie says
when asked about the difficulty of the BMT
experience. "It would have been helpful to
have been able to talk to other parents who
had been through this." Sophie and John
have therefore made themselves available
to others in similar situations. "We always
tell them to have a positive outlook about
it," she says, "and to instill that in their kids.
And to be strong for their kids."
"We’ve always had a positive outlook,"
John adds. "Back when Mia and Teddy had
thalassemia, we just looked at it as having
a few ‘extras’ to deal with. We just treated
it as a part of our lives."
"But," he says, "I can’t express how big this
has been in our lives–having the
opportunity to free our kids from the
burden of this disease."
"It’s been a long haul and sometimes tiring,
but we thank God for all of it."
Bone marrow transplantation (BMT) is a special
therapy that involves taking cells that are
normally found in the bone marrow (stem cells)
and giving them to another person. The goal of
BMT is to transfuse healthy bone marrow cells
into a person after his or her own unhealthy
bone marrow has been eliminated. In
thalassemia patients, the goal is to have the
body create new, healthy red blood cells from
the new bone marrow to permanently replace
the old, unhealthy cells that the patient’s body
would produce on its own.
Unlike BMT for some other diseases, which
sometimes require only the "best" genotypic
match between the patient and the marrow
donor, BMT for thalassemia usually requires a
"perfect" match. The closest perfect match is
usually a sibling, but there is only a one-in-four
chance that a sibling will have the proper criteria.
Bone marrow is usually obtained from the donor
by inserting a needle into a bone or bones and
withdrawing the marrow directly. In Marci
Xyloportas’s case, she was placed under general
anesthesia, then a needle was stuck in her hip in
four different places, from which 100 milliliters of
marrow was drawn. (The donor’s body is capable
of creating new marrow and will soon replace
that which is taken for use in BMT.)
The thalassemia patient undergoing BMT must
enter the hospital for chemotherapy treatment to
remove most or all of his or her blood forming
cells. The donor marrow is then infused into the
patient, where it will begin producing healthy
blood cells. The patient will probably also receive
GCSF, a treatment that boosts the production of
the white blood cells from the new marrow.
In the best case scenario, the marrow engrafts
properly and all of the blood cells produced in
the patient’s body originate from the donated
marrow. In some cases, recipients experience a
"mixed chimerism," meaning that their bodies
produce both their own thalassemic blood cells
and healthy blood cells. And in other cases, the
transplant does not work properly and the
patient remains thalassemic.
There is always a risk associated with BMT,
although the degree of risk varies depending
upon such factors as the amount of iron stores
in the body, the state of various organs and the
overall health of the patient. Potential
complications include Graft-versus-Host Disease
(GvHD) and infection.
Marci, with two gifts from Mia
Cooley’s Anemia Foundation
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California Girl Cooks Up Treat for CAF
A young girl from Fair Oaks, California
mixed together salmon, asparagus, eggs
and her own culinary skills to create a
delicious dish that benefited CAF.
Alyssa Rehart, whose brother has a mild
form of thalassemia, entered her
"Spectacular Smoked Salmon and
Asparagus Quiche" in the local Pillsbury
Kids Bake-Off in March of last year and
was named the winner in her district. She
then joined 32 other contestants in the
national Kids Bake-Off in Orlando, Florida
in June and won second place in the
competition. Alyssa received $5,000 as a
second prize winner and Pillsbury donated
the same amount to her favorite charity –
CAF.
California Chapter
The California chapter recently hired Brandie
Kittle to serve as chapter coordinator. Brandie is
a wife and mother of two children, one of which
was diagnosed with rheumatoid arthritis before
the age of 2. As a mother of a child with medical
problems, she knows the importance of keeping
the lines of communication open between patient
and doctor. She also has fundraising experience
and is excited to be in this new position.
CAF thanks Alyssa and Pillsbury for their
generosity of spirit and for helping spread
awareness of thalassemia.
Brandie Kittle
CAF Benefits from Miracle Day
On January 31, CAF received a generous
donation of $5,000 from CIBC World
Market’s Miracle Day campaign as a result
of a recommendation by WKTU radio
personality "Goumba Johnny" Sialiano, who
is an ardent supporter of CAF.
to the Miracle Day campaign. CIBC staff and
clients then nominate charities that serve
children as potential recipients; John Sialiano
made a special effort to see that CAF was
one of the 750 charities chosen as
recipients.
Miracle Day is a one-day annual event that
has raised more than $62 million since its
inception in 1984. On the date designated
as Miracle Day, participating CIBC personnel
selflessly donate their fees and commissions
CAF is thrilled to be a beneficiary of the
Miracle Day campaign this year and
expresses thanks to John Sialiano,
CIBC, its employees and its clients for
their munificence.
CAF ANNUAL SPRING GALA
Wednesday, April 24
Looking ahead, the chapter plans a June meeting
at the San Gabriel Community Health Education
Center at the San Gabriel Valley Medical Center.
There will be guest speakers and a continental
breakfast, plus a barbecue picnic lunch in the
park following the meeting.
The Suffolk chapter received $1,845 from the
grand opening ceremony for the Applebee’s
Restaurant in Commack. Smithtown Supervisor
Pat Vecchio recommended CAF to receive the
$5-per-person donation collected at the door.
Special guests:
WKTU's "Goumba Johnny" Sialiano
and Z100's Elvis Duran
Tickets: $200
Children’s fashions, furs, evening wear and
casual wear were featured at the 31st annual
"Share Your Heart" fashion show on October 26.
Almost 350 people attended the event at the
Melville Marriott. Raffle and door prizes included
Off-Broadway tickets, a leather jacket, gold
jewelry, a VCR and a handmade Afghan.
Chairwomen were Rose Mirabella and
Cathi Reidy.
Includes dinner, dancing, open bar,
entertainment, and auctions.
Call 718-321-2873 for more information.
"Goumba Johnny" Sialiano
Cooley’s Anemia Foundation
On January 11, the chapter held a silent auction
at the University of California Riverside, and it
plans a March fundraiser to Laughlin, Nevada.
Suffolk Chapter
7:00 p.m. - 11:00 p.m.
Surf Club,
280 Davenport Avenue,
New Rochelle, NY
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The California chapter recently established its
goals for 2002, which include raising public
awareness about thalassemia; supporting
California patients; raising awareness for
insurance help through California Children
Services (CCS); raising money for patient needs
as well as creating enjoyment activities for them;
gaining public support for chapter volunteers; and
creating a newsletter for California patients.
c h
In November, Stony Brook Hospital opened its
Thalassemia Transfusion Room. The room can
accommodate two patients at a time and is
equipped with an infusion chair, IV pole, blood
pressure machine and temperal scan
thermometer, as well as a TV, refrigerator and
radio/CD player. Special thanks to Kevin O’Hare
for working to make the idea a reality.
About 90 members attended the annual "Thank
You" holiday party on December 11. Dinner and
dessert were served, chapter president Ed
Martella spoke and the children had the chance
to meet Santa Claus.
Pace’s Steakhouse was the site for the January
22 "Beef-O-Rama," a cigar night with unlimited
appetizers, beverages, a porterhouse steak
dinner, raffles and door prizes. More than 120
people attended the event, which showed a
profit of $52,000. Some 700 raffle tickets were
sold, with prizes including a Jaguar X and
$10,000 and $5,000 cash. Jake Watral did a
wonderful job as president of the organizing
committee.
Next up for Suffolk is a wine tasting on May 20.
This will be followed by a Chinese Auction / Las
Vegas Night on June 7 at the Deer Park Brimaldi
Lodge. Chairwomen Barbara Fischer and
Maureen Funfgeld hope to top last year’s
auction, which raised $12,600 in profit.
Also in May, the Dr. Vincenzo Sellaro Lodge
#2319 Order Sons of Italy will hold its annual
blood drive for Cooleys’ anemia patients and
Suffolk County will designate May 26-June 1 as
Cooley’s Anemia Awareness Week.
Summer kicks off with the annual Teen Dinner
Dance at Hauppauge High School on June 1.
Admission is $20; raffle tickets are $1 each.
Prizes include a 19" color TV, a DVD Player and
a CD boom box. D.J. George Vasquez from PR
Player will provide music. The Hauppauge
Cooley’s Anemia Youth Group of Long Island,
Diane Sugrue and her daughter Michele are hard
at work on this special affair.
Jeffrey E. Funfgeld, founder of Oyster Bay Sand
and Gravel, will be honored at the Suffolk Dinner
Dance on June 21 at Leonard’s of Great Neck.
General Chairperson Maureen Funfgeld and a
tribute committee of 50 people hope to make
this event a huge success. Tickets are $175.
Finally, the 2nd annual Miles for Smiles
Motorcycle Rally/Carnival is scheduled for July
13th & 14th at the Dennison Building,
Hauppauge, N.Y. Tickets are $25 per motorcycle
and $10 per passenger. Food, entertainment,
carnival rides, vendors, contests, trophies and,
of course, motorcycles are featured. For details,
go to www.milesforsmiles.com.
Long Island Chapter
The November 17 dinner dance honoring Stuart
Goldstein, Michael Goldstein and James
Giordano was a tremendous success, taking in
more than $200,000. Over 300 people
attended, including Mets manager Bobby
Valentine and radio personality Curtis Sliwa.
The chapter also sponsored a blood drive on
Jan. 20 at St. Joseph’s Church in Hewlett.
Despite the fact that snow blanketed the area
the night before, attendance was very good;
some 88 units of blood were collected.
Upcoming is the "Pennies from Heaven Brunch"
on April 14 from 12:00 to 3:00 at the Marriott in
Uniondale. Tickets are $40.00 apiece, and
guests are encouraged to bring in their jars of
pennies and loose change. For more
information, call Connie Paradiso at 516-7478447.
Capital Area Chapter
An endocrinologist from Johns Hopkins spoke
at the February 10 meeting of the Capital Area
Chapter and addressed several topics, including
issues relating to diabetes and fertility.
The chapter is currently planning another blood
drive, tentatively set for Belair, MD and will hold
its next meeting on May 19 at 2:00 p.m.
Queens Chapter
Over 225 people attended the February 9
Queens chapter Valentine’s dinner dance.
Conceived as a small, romantic party, it has
become so popular that attendance increased
100% from last year. The chapter extends
special thanks to Paul Tucci for his excellent job
organizing the event.
The chapter’s annual Gala is March 29 at
Russo’s on the Bay in Howard Beach. The
evening will feature great food, prizes, and
dancing. City councilman Joseph P. Addabbo Jr.
will be the honoree. Call 718-848-6868 for more
information.
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Westchester-Rockland Chapter
The Westchester-Rockland chapter held a Night
at the Races fundraiser on March 1 at the VIP
Club in New Rochelle. Some 300 people were
expected to attend the event, which featured
betting on videotaped horse races, betting
tables, a raffle and a buffet dinner.
Staten Island Chapter
The Staten Island chapter’s annual Holiday Light
Display was a tremendous success, bringing in
about $32,000 and spreading thalassemia
awareness throughout the area. Held at the
home of chapter vice president Dominick
Casale, the display included a dazzling array of
more than 200,000 lights and was featured in a
television special, as well as on a number of
local newscasts.
The annual Let Your Heart Dance was held
February 22 at LiGreci’s Staaten Restaurant.
Great music was provided by the Roustabouts
and by deejay Joe D’Angelo.
A blood drive is planned during the week of May
6, date and location TBA. Lorraine Schiano will
chair the effort, which is part of the chapter’s
Thalassemia Awareness Week activities. During
that week, the chapter will also hold a
Community Outreach Reception at the Staaten
Caterers and advertise free trait screenings at
St. Vincent’s Medical Center.
Thanks to a grant from the Richmond County
Savings Foundation, the chapter has been raising
awareness in Staten Island by preparing a
website, communicating with area AARP groups
and planning ads in the NEWBORN NEWS and
the LaMorte Lodge OSIA newsletter. The
chapter is also committed to increasing outreach
into the Asian community, which has grown by
6% in Staten Island over the last few years.
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.
15
Interview with Matt Stamateris, New Jersey Chapter President
Matt Stamateris and James
At the January 24 meeting of the New
Jersey CAF chapter, four members were
elected as officers: Matt Stamateris
(President), Ralph Colasanti (Vice
President), Lauren Sardineer (Secretary)
and John Scanlon (Treasurer).
Matt and his wife, Amy Celento-Stamateris,
are the parents of James, who was
diagnosed with thalassemia in 1999. We
spoke briefly with Matt about the chapter
and plans for its future.
How long have you been involved with
CAF? How did you first learn about it?
Amy and I attended the CAF national board
meeting in 1999 shortly after we
discovered our son, James, had Cooley's
Anemia. I believe Amy found out about
CAF through her own research.
art gallery event on April 13; details are
being still ironed out at this date. Looking
ahead, our annual golf outing will be held
on September 23 at the Minisceongo Golf
Club in Pamona, NY, and we will have a gift
wrapping event in December at Borders
books.
Why did you run for president of the
chapter? Are there certain goals you want
the chapter to achieve or ideas you have
about what the chapter should be doing?
Since our family is directly impacted by
Cooley's anemia, I wanted to get involved
with the New Jersey chapter; serving as
the chapter president facilitates my
involvement. My goal for the New Jersey
chapter is to bring it to a level of consistent
performance in fundraising, raising
awareness and patient care. I look forward
to working with the other officers and
members to achieve this goal.
How many people are currently chapter
members?
Including the officers there are 14 members
and growing.
What are the immediate plans for the
chapter?
The New Jersey chapter will be holding an
What do you think are the most pressing
problems facing thalassemia patients?
Ensuring a safe and sufficient blood supply,
and developing an oral chelator that passes
FDA standards.
If we could look forward into 2012, what
would you like the New Jersey chapter to
be like in ten years?
In 2012, I envision the New Jersey chapter
being successful in improving the quality of
life for our patients through its fundraising,
awareness and patient care efforts.
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