Annual Report – FY 2014
Cooley’s Anemia Foundation
330 Seventh Avenue, #200
New York, NY 10001
(800) 522-7222
Fax: (212) 279-5999
info@cooleysanemia.org
www.cooleysanemia.org
Statement of Purpose
The Cooley's Anemia Foundation is dedicated to serving people afflicted with
various forms of thalassemia, most notably the major form of this genetic blood
disease, Cooley's anemia/thalassemia major.
Mission
The mission of the Cooley’s Anemia Foundation is to increase life expectancy and
enhance the quality of life for those impacted by thalassemia, a class of genetic
blood disorders, most of which require regular blood transfusions and aggressive
management of chronic iron overload, the predominant cause of early death. We do
so by funding medical research to advance treatment and curative approaches, by
supporting and advising patients and their families and advocating on their behalf
and by educating medical professionals and the general public.
Every day, we strive for longer and healthier lives for all patients with thalassemia
until a universal cure is found.
As the leading voice for the thalassemia community in the United States, CAF
continues to make its presence felt across the country. Some of our many
accomplishments during FY 2014 (July 1, 2013 – June 30, 2014) include:
2014 Patient-FamilyConference. More than 250 people attended this year's
Conference, making it one of CAF's most successful in terms of attendance. Held in
Rosemont, IL from June 20-22, 2014, the Conference was a unique opportunity for
thalassemia patients, family members and friends to hear from some of the finest
experts in the thalassemia field on issues of medical significance to the population.
Workshops on a wide range of topics, many of them patient-led, complimented the
presentations.
Cooley's Anemia Advocacy Forum. The Cooley’s Anemia Advocacy Forum
(CAAF) is the Cooley’s Anemia Foundation’s (CAF) network of patients and their
families who engage in federal health policy advocacy efforts that improve the
research, treatment and care of those with thalassemia at the federal level. We are
currently standing strong at just over 80 members of the Forum. The Advocacy
Forum provides a venue for patients and their families to become effective health
policy advocates. The Forum’s members have delved into the federal budget
process to learn more about the programs that the federal agencies are involved in
– like the CDC’s Division of Blood Disorders, which funds the Thalassemia
Treatment Centers, or the Health Resources and Services Administration’s grants to
improve comprehensive care of those with thalassemia, as well as the funding of
research in thalassemia for areas like gene therapy. They also have learned and
shared information about the Affordable Care Act’s (ACA) implementation.
Outreach to Chinese-American Community. In FY2014, CAF participated in a
series of special outreach activities focusing on the Chinese-American community in
New York. Making these activities even more special has been the participation of
several mothers of children with thalassemia, who have communicated their unique
experiences and perspectives to these meetings. The events were organized by
Assemblyman Peter J. Abbate, Jr. and held at Chinese-American community centers
in New York City.
Thalassemia Health Q&A. CAF gathered questions from the patient community
and submitted them to Dr. Richard Ward, who supplied answers. These Q&A
sessions were then posted on the CAF website and promoted via social media.
Among the topics covered were adherence strategies, bone health and hepatitis C.
Medical Research Fellowships and Grants. In FY 2014, CAF awarded four new
medical research fellowships and renewed funding for an additional four medical
research fellowships and one clinical research grant; total funding equals $300,000.
Funding was awarded in Fy2014 for a period beginning July 1, 2014.
Recipients of new medical research fellowships for 2014-2015 include:
Shanrun Liu, PhD, of the University of Alabama at Birmingham, "Correction
of Humanized Cooley's Anemia Mice by Gene Editing of Hematopoietic Stem
Cells."
David Wiley, PhD of Boston Children's Hospital and Howard Hughes Medical
Institute, "The Role of Thyroid Hormone Signaling Pathway in Globin
Switching."
Santhosh Verghese, PhD, of University of Oregon Health Sciences University,
"Development of a 2nd Generation Mitotically-stable Anchored NonIntegrating Lentiviral Vector (aniLV-II) for Hematopoietic Stem Cell Gene
Therapy."
Delphine Meynard, PhD, of INSERM in France, "Matripase-2; new therapy for
non-transfusion dependent thalassemia based on matripase-2 inhibition."
Recipient of renewal clinical research for 2014-2015 include:
Marsha Treadwell, PhD, Children’s Hospital & Research Center Oakland,
“Self-efficacy and adherence with iron chelation therapies in thalassemia.”
Recipients of renewal medical research fellowships for 2014-2015 include:
Farzana Sayani, MD, FRCPC, University of Pennsylvania, “Metabolomics
biomarker profiles to predict cardiac disease in transfusion-dependent betathalassemia.”
Hemant Kini, PhD, University of Pennsylvania, “Mechanism of PABPC4 action
regulating terminal erythroid differentiation”
Carla Casu, PhD, Weill-Cornell, “Novel approaches to treat iron overload in
thalassemia.”
Shigeki Iwase, PhD, University of Michigan, “Variable number tandem repeats
and heterochromatin in α-thalassemia."
INCOME AND EXPENSES
The following is an overview of the Cooley’s Anemia Foundation’s income and
expenses for the fiscal year ended June 30, 2013:
Total Support & Revenue:
$1,998,700
Program Expenses:
Research and Grants
Public Information
Patients Services
Community Services
Total Program Expenses:
$370,188
$333,369
$433,721
$57,384
$1,194,662
Management & General Expenses:
Fundraising Expenses:
Total Expenses:
$299,259
$199,783
$1,693.704
End of Year Net Asset Balance:
$2,001,770
CAF Board of Directors
FY 2014
Anthony J. Viola, President
Amy Celento, Vice President
Dean Hernan, Treasurer
Janice Cenzoprano, Secretary
Nunzio Cazzetta, Vice President, By-Laws Committee
Robert Ficarra, Vice President, International Affairs
Dean Hernan, Vice President, Fundraising Committee
Ellis Neufeld, MD, Chairman, Medical Advisory Board
Robert Aiello
Cammie Brandofino, Executive Committee
Shirley Cammilleri
Julia Cenzoprano
Mary Ann Cervoni-Iaia
Thomas Cheng
Peter Chieco
Alan Cohen, M.D.
Ralph Colasanti, Executive Committee
Terri DiFilippo, Executive Committee
Carol DiTrapani
Joseph DiTrapani
Anthony Ferrino
Antoni Foe
Frank Fusaro
Maria Hadjidemetriou, Executive Committee
Ben Jacobellis
James Kalpakis, Esq.
Frank Marzano
Gianna Palminteri
Paul Polo
Thomas A. Rotolo
Philip Rutigliano
Joseph Sciame
Mateen Shah
Christine Somma
Frank Somma
Frank Tidona, UNICO
Theresa Tomaino
Joseph Vigliotti
Lilia Viscomi
David Younger, MD
National Executive Director: Gina Cioffi
The Cooley’s Anemia Foundation is tax-exempt under section 501 (c) (3) of the
Internal Revenue Code. Donations are tax-deductible to the extent allowed by law.