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

Our mission is advancing the treatment and cure for this fatal blood disease. We also strive to enhance the quality of life of patients and educating medical professionals, trait carriers and the public about Cooley’s Anemia/Thalassemia Major.

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

Peter Chieco is the National President of the Cooley’s Anemia Foundation, and has been involved in the Foundation as a volunteer since 1988.

Currently a Senior Portfolio Management Director at Morgan Stanley’s Portfolio Management Group, Peter began his career at Paine Webber and later joined Smith Barney.

He attained a Bachelor of Science degree in Finance from Fordham University in 1982. He received the Certified Investment Management Analyst®SM (CIMA®) in 2003 from the Investment Management Consultants Association (IMCA), in conjunction with Wharton Business School at the University of Pennsylvania.

In 2018, Peter was ranked once again as one of Barron’s Top 1,200 Advisors. He was also recognized as one of The Financial Times Top 400 Financial Advisors. A frequent guest speaker and writer, his seasoned perspectives on investment strategies and markets have been featured by various media outlets throughout Connecticut and the United States.

Peter and his wife, Rose Ann, reside in Bedford Corners, NY. They have three daughters. He also enjoys tending to his large organic garden and sharing food with his neighbors, friends, and a local community center. He also loves traveling and spending time with his family. Peter’s philanthropic efforts focus on health disorders, and far and away his most passionate volunteering since 1989 has been for CAF.

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.