For
over 30 years, the friends of Allen and Harriet Goldberg raised money to help
patients and families with aplastic anemia in honor of their son, Earl, who
passed away at the age of 14 from the disease. Some of the $171,000 they
raised supported an AA&MDSIF Research Grant to Dr. Seth Corey of UT-MD
Anderson Cancer Center for his study of the effects of an enzyme on controlling
the demise of blood cells. Earl and his family inspired patients, families and
friends across Chicago and nationwide to raise awareness and support to fight
this bone marrow failure disease. As AA&MDSIF has grown to reach more
people than ever before, and local chapters are being transformed into
Communities of Hope, we want to pay tribute to the generosity, leadership and
commitment of everyone involved over the years in this tremendous volunteer
effort.
Leadership Awards
About the Awards:
Leadership in Philanthropy: Recipients are selected for their continued and consistent generous financial support of AA&MDSIF programs and services. Such support may be through their personal charitable giving or through achievement in fundraising that draws in the support of a larger community.
Leadership in Science: Recipients are selected for their contributions to the fields of bone marrow failure disease treatment and/or research. Nominees are considered for their impact on patients and families affected by aplastic anemia, MDS and PNH, and/or their contributions through research to increasing knowledge and understanding about these diseases. Additional consideration is given to those who have demonstrated a commitment to AA&MDSIF.
Leadership in Service: Recipients are selected for their demonstrated commitment of time, energy and ideas that raise awareness for AA&MDSIF and bone marrow failure diseases. Their outreach to engage the public and/or AA&MDSIF patients and families results in new levels of achievement for AA&MDSIF.
Award Year: 2011
Earl J. Goldberg Chapter of AA&MDSIF
Leadership in Philanthropy
Tony Sanfilippo
Leadership in Service
Since
1997, Tony has served on the AA&MDSIF Board of Directors, bringing his
professional expertise from the financial and investment world to the
organization. But it was his personal experience as the parent of a young
daughter with aplastic anemia that cemented Tony’s and his wife, Briget’s,
commitment to helping other patients and families. Rachel, now an adult,
was successfully treated with ATG and has been medication free for over a
decade. Tony’s involvement has grown from early involvement in the
AA&MDSIF’s Earl J. Goldberg Chapter in Chicago in the 1990s, where his
family lived when Rachel was diagnosed, to now serving as Treasurer on
AA&MDSIF’s Board. Tony’s leadership has contributed to the long-term
financial strength of the organization and allowed for its growth to serve more
patients and families with more programs. He and Briget have also matched
his service to the organization with their philanthropic leadership, giving
generously over the years. Now living in Westport, CT, AA&MDSIF is
pleased to recognize Tony Sanfilippo for his years of service in this
way.
Award Year: 2010
Jaroslaw Maciejewski, M.D., Ph.D.
Chairman of Translational Hematology and Oncology Research at the Cleveland Clinic Taussig Cancer Institute, and a professor of medicine at Lerner College of Medicine at Case Western Reserve University
Leadership in Science
Dr. Maciejewski is recognized for his leadership in finding better
treatments and a cure for bone marrow failure diseases, as well as his
commitment to cultivating a new generation of researchers in his lab. He also provides the highest quality care and
compassion to his patients, and the AA&MDSIF community. His clinical areas of expertise include
bone marrow failure syndromes - aplastic anemia, MDS, large granular lymphocyte
leukemia, PNH - and myeloid malignancies. His
research includes the molecular pathogenesis of these disorders and various
specific aspects of stem cell biology, genetics, cytogenetics and
immunobiology.
Jo Alley and the Volunteers of AA&MDSIF Michigan
Leadership in Philanthropy
Led by Jo Alley and her husband, Ron, this dedicated group of
volunteers has raised almost $125,000 through their fundraising events over the
past 15 years including their Boot, Scoot and Boogie evening and the sales of
holiday cards raising awareness about bone marrow failure diseases. This tight-knit group of patients, families
and friends continues its work in memory of loved ones lost to these diseases
including Jo and Ron’s son Shawn – a 25-year aplastic anemia survivor who lost
his battle in 2010.
Steven C. Groft, Pharm.D.
Director of the Office of Rare Diseases (ORD), National Institutes of Health (NIH)
Leadership in Service
Dr. Groft has been
focusing attention on rare and orphan diseases like those AA&MDSIF has
spent the past 27 years fighting. His
leadership and vision have brought often-neglected and little known diseases
into the spotlight as deserving of clinical attention and financial resources
for research. Together, 25 to 30 million
people in the United States have a rare disease, millions more are caring for a
loved ones with rare diseases, and millions more as employers and friends are
impacted. Highlights of his work include
time at the Food and Drug Administration in the Office of Orphan Products Development,
and at the Department of Health and Human Services as Executive Director of the
National Commission on Orphan Diseases.
Award Year: 2009
Richard Stone, M.D.
Clinical Director of the Adult Leukemia Program at the Dana-Farber Cancer Institute, Attending physician at Brigham and Women’s Hospital, and Associate Professor of Medicine at Harvard Medical School
Leadership in Science
Dr. Stone cares for
patients with acute and chronic leukemias, myelodysplasia and
myeloproliferative disorders. Dr. Stone
conducts clinical and translational research with the goal of deriving better
outcomes for patients with these disorders.
His laboratory research focuses on the mechanism of leukemic cell
differentiation, with the ultimate goal of producing new cancer therapies.
Mary Ellen & William Madden
Leadership in Philanthropy
Mary Ellen and Bill Madden, and their family, have given with
unparalleled generosity to AA&MDSIF over the past two decades since they
lost their daughter Mary Pat Madden-Grieshaber to aplastic anemia. They, along
with son, Marty Madden and daughter, Margie Ward, have been champions of
AA&MDSIF since its early days.
Ruth and Neil Cuadra
Leadership in Service
Ruth and Neil are recognized for their development and operation of MarrowForums.org, Ruth’s long tenure of service on AA&MDSIF
Board of Directors, and Neil’s volunteer support. They are great ambassadors for AA&MDSIF,
which they turned to after Ruth – a transplant survivor - was diagnosed with
aplastic anemia and MDS more than a decade ago.
Award Year: 2008
H. Joachim Deeg, M.D.
Medical Oncologist, Seattle Cancer Care Alliance, Professor of the Medical Oncology Division at the University of Washington Medical School, Member of the Fred Hutchinson Cancer Research Center’s Clinical Research Division
Leadership in Science
A long-time friend of AA&MDSIF, Dr. Deeg
brings a beacon of hope for patients and their families facing MDS through his
research and his personal care, Highly
regarded for his outstanding contributions as a researcher and clinician, Dr. Deeg specializes in treating blood disorders, bone marrow
transplant, leukemia and myelodyplastic syndromes (MDS).
JoAnn and Don Yahn
Leadership in Philanthropy
JoAnn and Don Yahn have raised more than
$200,000 over the past decade in memory of their daughter, Torry, who battled
aplastic anemia as a teenager. The Torry
Yahn Research Study grants funds for medical research to find a cure for
aplastic anemia. Beyond their
extraordinary fundraising efforts that culminate in their Annual Chicken BBQ
and Auction, their compassion serves as a lifeline and source of strength for
families facing bone marrow failure disease.
Resources For
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