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05/30/2001 U.S. REP. JOSEPH MOAKLEY JOINED THOUSANDS WHO LOST
BATTLE WITH RARE BONE-MARROW FAILURE DISEASE

For Immediate Release


Contact: Marilyn Baker
800-747-2820


U.S. REP. JOSEPH MOAKLEY JOINED THOUSANDS WHO LOST BATTLE WITH RARE
BONE-MARROW FAILURE DISEASE




International Foundation Provides Essential Weapons in Fight




Wednesday, May 30, 2001 (Annapolis, Md) —When U.S. Rep. Joseph
Moakley of Massachusetts announced he had myelodysplastic syndrome
(MDS), he joined thousands worldwide struck by this mysterious, often
fatal bone marrow failure disease. Like many, he said he would keep
fighting, although treatment can be grueling and not all cases can be
cured.

The best weapons Moakely and other patients have are information,
support and research into new treatments – all provided by the
Aplastic Anemia & MDS International Foundation (AA&MDSIF), the
sole patient-centered resource on these diseases.

“One of our main goals is to give patients the knowledge they need
to take an active part in treatment decisions,” says Executive
Director Marilyn Baker, who answers calls from all over the world from
patients, their families and the media at the Foundation’s toll-free
information number (800-747-2820).

“Support is scarce for most patients,” Baker says. “There’s
rarely another person in your town with these diseases. You’re really
alone, and that makes it more frightening. Some patients even find their
disease is a mystery to their doctor. We reassure patients that we know
survivors and explain the treatments that worked for them.”

In addition to offering research grants to scientists, AA&MDSIF
serves as an objective, authoritative, worldwide information source. A
distinguished medical board researches and confirms the accuracy of all
information the Foundation provides and monitors its activities.

Patients can find up-to-the-minute news and research with a phone
call to the Foundation or a visit to its Web site at www.aamds.org. Each
month, the Foundation fields about 1,500 calls, and the Web site gets
about 600 requests for information. Patients also share information with
one another through the Foundation’s Global Volunteers Network and
annual patient-centered conference. Among the vital facts patients
discover about aplastic anemia and MDS are:

bullet ·Aplastic anemia and myelodysplastic syndromes are non-contagious
blood diseases that can strike regardless of age, gender, race or
geographic location. They occur when bone marrow stops making enough
healthy blood cells.
bullet ·Estimates put new cases of aplastic anemia at 300 per year and
of MDS at 20,000 per year. The diseases are too rare to be reported
to public health agencies such as the Centers for Disease Control
and Prevention. But AA&MDSIF keeps a patient registry database,
one of the few sources for statistical information on the diseases.
bullet ·The most common treatments are transfusions, drugs that suppress
the immune system and bone-marrow transplants. While transplants
have effected some cures, a bone-marrow match is hard to find; even
among relatives, an exact match occurs only about a third of the
time.
bullet ·Many cases have been linked to exposure to toxic chemicals or
radiation. Some have a genetic component, and some are the result of
the body’s reaction to a virus or infection. In most cases, the
cause is unknown.

Not even scientist Carl Sagan, who died in 1996 of MDS, had heard of
the disease before he was diagnosed. Other people of note who have had
aplastic anemia or MDS include scientist Marie Curie; U.S. Senator Paul
Tsongas; Maureen Starkey, first wife of Ringo Starr; and the brothers of
golfer David Duvall and soccer player Mia Hamm.

With a small administrative staff and budget, AA&MDSIF receives
no corporate or government funding. “One hundred percent of our
funding comes from individual families grateful for our services,”
Baker says.

The Foundation’s Web site, www.aamds.org, offers many ways to help
combat aplastic anemia and MDS, including links to information on blood,
platelet and marrow donation, and ways to raise money for research. For
more information on these diseases and the Aplastic Anemia & MDS
International Foundation, call 800-747-2820 or e-mail aamdsoffice@aol.com.

 



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Aplastic Anemia & MDS International Foundation, Inc.

P.O. Box 613
Annapolis, Maryland
21404-0613

800.747.2820
410.867.0242
aamdsoffice@aol.com

 


 



 
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