About The Cooley’s Anemia Foundation
Statement of Purpose of the Cooley’s Anemia Foundation
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.
History of the Cooley’s Anemia Foundation
For over fifty 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.
Frank Ficarra
In 1954, Frank Ficarra was a young Italian-American businessman working in Brooklyn when two of his young children were diagnosed with 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. They would 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. CAF 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. Robert continues the work his father began on an international scale. He reaches 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. The goal for better treatments and a cure for a disease which threatens their most precious resource – their children.
The National President of the Cooley’s Anemia Foundation
Ralph Colasanti is proud to be the first person with thalassemia to serve as the National President of CAF. Ralph has been married to Carlene for 30 years and is the father of two children, Jessica and Ryan, and grandfather to Blair.
Ralph followed a career in IT for over 30 years before becoming a financial coach, studying how money works, and obtaining a license in insurance and securities.
Ralph helps others by teaching them how to make their money work harder for their families. He has been providing people with a solid financial education for over 10 years.
The National Executive Director
Craig Butler is the National Executive Director of the Cooley’s Anemia Foundation, which has been leading the fight against thalassemia for over half a century. Craig has been an active participant in that fight for over a decade, starting with the Foundation as National Communications Director in 2001.
In addition to directing all communications-related activities in that capacity, he also served as the Principal Investigator on the Foundation’s collaborative agreement with the Centers for Disease Control and Prevention (CDC). This collaboration helps educate the thalassemia community about effective prevention strategies that can contribute to better outcomes for those with thalassemia.
In addition to advocating on behalf of individuals with severe forms of thalassemia, Mr. Butler directs Cooley’s Anemia Foundation efforts aimed at informing both the general public and specific at-risk populations about thalassemia trait.
He also oversees programs to encourage all members of the public to donate blood, as treatment for thalassemia involves frequent lifelong transfusions. Mr. Butler is proud to be the author of “The Cooley’s Anemia Foundation Storybook,” a publication for children with thalassemia.
Mr. Butler received a BFA from Syracuse University and an MA from New York University.
Tax Exempt Status
As a 501(c)(3) organization, donations to the Cooley’s Anemia Foundation are tax-deductible to the extent allowed by law. If you have any questions, please contact info@thalassemia.org.
Annual Report of the Cooley’s Anemia Foundation
An annual report on recent CAF activities can be accessed by clicking here.
Audited Financial Statement
CAF’s most recent audited financial information can be downloaded by clicking here.
Form 990
CAF’s most recent Form 990 can be accessed by clicking here.
Privacy Policy
CAF’s privacy policy can be accessed by clicking here.