American nonprofit organization
Cooley’s Anemia Foundation (CAF) is an American 501(c)(3) nonprofit organization that funds medical research and education to benefit individuals living with the genetic blood disorder thalassemia. The major form of this disorder is also known as Cooley's anemia.
History.
Established in 1954, the foundation was conceived by its founder, Frank Ficarra, the father of two children who were born with thalassemia. Although the Foundation was founded in Brooklyn, New York, it has expanded its scope to include patients from across the United States.
Medical research.
The Foundation supports medical research with the goal of improving treatment and finding a cure. Medical research considered for funding includes clinical trials in cell and gene therapies, and ongoing clinical projects with a focus on iron overload, cardiac complications, family planning, and psycho-social effects. In addition, fellowships are offered to clinical and basic science investigators (postdoctoral or junior faculty) with an interest in thalassemia or research with a direct application to thalassemia and/or its complications.
In 2014, the Foundation awarded $300,000 in medical research funding. All applications are examined and discussed by a Medical Review Committee, composed of individuals with expertise in various aspects of thalassemia research and treatment.
Among the many areas in which the Foundation has supported research are the mechanisms of iron regulation, gene editing, and gene therapy as potential curative approaches to thalassemia; vector development; nutritional requirements in thalassemia; strategies for improving adherence to thalassemia treatments; fertility and pregnancy in thalassemia; cardiac issues in thalassemia; pulmonary hypertension; fetal hemoglobin production; and approaches to iron chelation therapy.
Published medical research funded in whole or in part by the Foundation includes:
Symposia with the New York Academy of Sciences.
Since 1964, the Foundation has partnered with the New York Academy of Sciences to present periodic symposia specifically focusing on the current status and future directions of clinical care and research in the area of thalassemia. As of 2014, nine of these Cooley's Anemia Symposia have been presented; the tenth is currently scheduled for October, 2015.
These Symposia bring together experts in thalassemia from around the world and offer an opportunity for clinicians, scientists, nurses and others involved in thalassemia care and research to share information and learn about up-to-date therapies and strategies that can have a current and future impact on patient care.
Collaborative work with government agencies.
The Foundation makes a priority of educating and informing government agencies and officials about the needs of the thalassemia community.
Patient services.
Patient programs are a major component of the Foundation's activities. As a lifelong disorder, individuals born with thalassemia face a wide range of challenges from infancy onward. With advances in treatment resulting in a significant expansion of life expectancy, patients are discovering new challenges in adulthood which earlier generations of patients did not face.
The Foundation provides a patient services department to help patients and family members learn about the disorder and its challenges and to provide them with information that can have a positive impact on meeting thalassemia-related challenges. Among the services offered by the Foundation are:
References.
 ;templatestyles src="Reflist/styles.css" / ;