Cooley's Anemia Foundation, Inc.

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.

We seek to find a universal cure. To this end, we fund clinical research. When the Foundation was begun in 1954, patients rarely lived pass adolescence. Today, thanks to advances in clinical intervention funded by our research partners, patients are living into their fifties and sixties. We also seek to connect with more patients in additional ethnic groups who are affected by this genetic disorder to advise them of our patient services and support, including information on genetic traits. We are stepping-up our efforts to attract this important demographic and to alert the general public about our services.

We are the only national organization focused solely and exclusively on thalassemia. We are also the only foundation simultaneously funding research for the cure of thalassemia, providing information and counseling to patients, and letting others know about disorder and the fight to end it. We are also different in that, while we are an organization of modest size and means, we have succeeded over the past sixty years in making the needs of our patient population known to government agencies in a manner that belies our size.

An estimated 150,000,000 people worldwide carry the trait for thalassemia. An estimated 2,000,000 Americans carry the trait. Some 100,000 babies are born each year with a severe form of thalassemia. Without proper care, infants born with a severe form of thalassemia rarely survive infancy. In one survey, 52% of reported causes of death of US patients was cardiac-related (depsite the fact that most patients expire before reaching age of 50.) In another study, 37% of thalassemia patients were diagnosed with heart disease, with the mean age of onset at 23 years. Because trait carriers are typically asymptomatic, most are unaware that they are carrying a trait and can pass a severe form of the disorder on to their children.

The Cooley's Anemia Foundation is dedicated to serving people throughout the United States afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley's anemia/thalassemia major. We are also the primary funding source for research studies that have resulted in various medical breakthroughs in the search for a cure - primarily raising the life expectancy by several decades. As the leader in medical research initiatives, Cooley's Anemia Foundation is producing results that will benefit patients around the world. Patients in the US also receive direct benefit from our annual Patient-Family Conferences; educational materials on thalassemia, its management and complications associated with it; an on-staff Social Worker who develops strategies to assist patients facing special issues; and our communications efforts which connect patients and families around the country.

We believe that we husband our resources very efficiently. We have a very small staff and rely heavily on volunteers to organize and carry-out fundraising activities. Our resources go primarily to providing patients with information and counseling, funding research and clinical trials, and hosting an annual patient/family national conference at which thalassemia medical experts provide vital information. We have also continued our long-running series of periodic symposia conducted in collaboration with the New York Academy of Sciences which bring together the international thalassemia medical and scientific communities.

For more than sixty years, the Cooley's Anemia Foundation, a 501(c)(3) nonprofit organization, has been a strong and supportive partner for families living with thalassemia. Although now national in scope, CAF began on a local level – a fact reflected in the continuing importance of our local chapters.

In 1954, Frank Ficarra was a young Italian-American businessman working and living in Brooklyn when two of his young children were diagnosed with a rare blood disease, Cooley's anemia, also known as thalassemia major.

Frank Ficarra began organizing neighborhood blood drives to make sure that his children and others like them would have the precious blood they needed to survive. Even though these blood drives were successful, Frank Ficarra realized that more was needed.

One autumn night, Frank Ficarra and the parents of other Cooley's anemia patients met in the back of his Brooklyn butcher shop to discuss what they could do to help their children and let the world know about this rare disease. From that meeting, the seeds of the Cooley's Anemia Foundation were sown.

Since that night, CAF has grown into a national and international force with an extraordinary record of accomplishments. CAF established the first Fellowship Program for thalassemia research and has become a strong voice in Washington for thalassemia patients and their families.

Today, Frank Ficarra's son, Robert, serves as CAF Vice President of International Affairs and continues the work his father began on an international scale, reaching out to patients in every corner of the globe where medical knowledge and supplies are lacking.

What began as the story of one man's family is today the story of many families working together toward a common goal – better treatments and a cure for a disease which threatens their most precious resource – their children.

We have yet to find the cure and will not stop until we do.