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Life l ine
January 2012
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Cooley’s Anemia Foundation
Leading
Get out your calendars – open up your
eCalendars – and mark Sunday, May 6
for CAF’s Care Walk 2012!
CAF’s Care Walk is planned as a way
to bring together the thalassemia
community and its supporters around the
country. Rather than hold one huge walk
in one location, which many people would
have a difficult time reaching, we ask
our friends and supporters to plan their
own Walk. It can be as simple as one
person walking around his neighborhood
or a hundred people walking through
a nearby park.
*
Centers marked with an have been selected
to receive funding from the Centers for Disease Control
and Prevention for a specific thalassemia initiative.
Thalassemia Treatment Centers
Children’s Hospital & Research Center at Oakland
Dir: Elliott Vichinsky, MD
Contact: Dru Foote, (510) 428-3342
*
Weill College of Cornell University
Hospital, Chicago
* Children’s Memorial
Dir: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618
Children’s Hospital Los Angeles
*
Dir: Thomas Coates, MD
Contact: Susan Carson, (323) 361-4132
of Philadelphia
* Children’s Hospital
Dir: Alan Cohen, MD
Contact: Vanessa Nixon (215) 590-2197
Children’s Medical Center Dallas
Hospital Boston
* Children’s
Dir: Ellis Neufeld, MD
Contact: Jennifer Braunstein, (617) 355-2457
New Patients: Michelle Burnett, (617) 355-8246
Dir: Zora R. Rogers, MD
Contact: Deborah Boger, (214) 456-6102
These Thalassemia Treatment
Centers are equipped to address
the multiple concerns of thalassemia
patients, including annual
comprehensive care evaluations.
They are also happy to work with
your current hematologist to help
coordinate your care.
Texas Children’s Hospital (Houston)
Dir: Donald Mahoney, MD
Contact: (832) 822-4213
Call today to set up your appointment!
*
Dir: Patricia Giardina, MD
Contact: Dorothy Kleinert, (212) 746-3404
Healthcare of Atlanta
* Children’s
Dir: Jeanne Boudreaux MD
Contact: Laurie Thomas, (404) 785-3529
In addition, there are a number of thalassemia treatment
centers which are associated with the centers listed above.
Contact CAF at (800) 522-7222 for a list of these Centers.
Last year, our first Care Walk was a huge
success, raising almost $200,000 for
CAF’s programs while creating a sense
of excitement in the thalassemia community.
(This year’s goal: $350,000!) More than
2,000 people across the country
participated as a way of saying “No one
with thalassemia is alone!”
“Children’s Hospital Los Angeles (CHLA)
organized a Care Walk to connect patients
and families and spread awareness
of thalassemia to the public,” says Liz
Morasso, Social Worker at CHLA, of last
year’s event. “With such a geographically
diverse population, we found that many
of our patients had never met. We also
found that many people in the community,
even members of patient’s family, were
unfamiliar with thalassemia and how
it affects those they love every day.”
“The Care Walk was so fun and touching
at the same time,” says Liz. “I was
overwhelmed by the support of this cause
from patients, families, friends, and the
community. I loved the enthusiasm each
team shared in their signs, cheers and high
fives. Patients and families alike connected
at the resource and snack tables and
provided each other with support they may
the
Fight
Against
Thalassemia
Care Walk 2012
is Coming on May 6
not have been able to easily access before
this experience.
“We left Care Walk motivated to continue
working towards a cure, provide
psychosocial support, and assist our families
in becoming advocates for themselves
and the thal community. These creative
methods also lent a voice to all those
affected by thalassemia, both directly and
indirectly, living and deceased. The Care
Walk provided people that space.”
For Tara Maziarz, organizing a Care Walk
near her college was a way to honor her
fiancée, Ian Wiles, who had recently passed
away from complications related to
thalassemia. “I absolutely loved the Care
Walk experience,” she says. “I couldn't
think of a more uplifting and helpful way
to remember Ian. It got me through a lot
of hard times, and I am thankful to my entire
Public Relations class for helping out. There
was a real sense of unity between everyone
and a positive attitudes towards helping
a great cause.”
Ro Malik, whose sister has thalassemia,
helped organize a Chicago area Care Walk
to become more involved with CAF
and because “there seems to be a larger
support network on the east and west
coasts but not as much in the midwest.
My sister is such an inspiration to me.
I wanted to raise awareness of thalassemia
in Chicago and bring other people and
families together who are affected by this
rare blood disorder.
“I thought the Care Walk Experience was
wonderful. One of the fathers reached out
to the local NBC station and secured us
a spot on the morning news to promote
the Care Walk.”
Ro especially liked the fact that the Care
Walk brought family and friends together
to provide a sense of community. “One
of the nurses from Children's Memorial
Hospital commented, ‘I have been to
a number of events in Chicago over the
years that support thalassemia but this
is by far the best turn out we have ever
seen.’ I cannot tell you how happy I was
to hear that.”
Whether walking alone or with 100 other
people, participating in a Care Walk is an
unforgettable experience. Make sure you
are part of that experience this year.
For more details, go to
www.tinyurl.com/CareWalk2012 or contact
NathaliaPerozo, n.perozo@cooleysanemia.
org or (212) 279-8090.
DISCLAIMER:The information in this publication is for educational purposes only and is not intended to
substitute for informed medical advice. You should not use this information to diagnose or treat a health
problem or disease without consulting a qualified health care provider. The Cooley's Anemia Foundation
strongly encourages you to consult your health care provider with any questions or concerns you may
have regarding your condition.
Cooley’s Anemia Foundation
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