About The Foundation

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

Our mission is advancing the treatment and cure for this fatal blood disease, enhancing the quality of life of patients and educating the medical profession, trait carriers and the public about Cooley’s anemia/thalassemia major.

History

501C3For 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 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.

The National President

Anthony J. Viola, CAF’s National President, was born in Queens, NY and raised in Long Island, where he currently resides with his lovely wife, Susan, and sons Anthony and James. A graduate of C.W. Post College and a member of the American Institute of Certified Public Accountants and the New York State Society of Certified Public Accountants, Tony is  a Senior Partner at the public accounting firm of Sanders Thaler Viola & Katz, LLP (“STVK”) located in Jericho, NY.

He has been involved with CAF for many years, due to his close relationship with cousins Nunzio Cazzetta, Jr. and Ralph Cazzetta, both of whom succumbed to complications related to thalassemia. Starting in 1996, he was involved for several years with an annual golf outing fund raiser for CAF and annually plays a leading role on the committee which plans CAF’s very successful Cigar Smoker.

Tony started volunteering for CAF in 1989.  The first fundraising event in which he took a leading role was a golf outing that raised approximately $40,000.  After several years of spearheading the golf outing, Tony co-founded the annual Cooley’s Anemia Cigar Night, which became one of the backbone fundraising events of the Cooley’s Anemia Foundation.  The Cigar Night event ran from 1999 to 2013 and raised well over $2,000,000 during those years.  In 2014, the Cigar Night Committee transformed the event into an Annual Gala, held each year in June.  The 2014 Gala, celebrating the 60th anniversary of the Cooley’s Anemia Foundation, raised over $300,000.  Because of the money raised from his many events (such as the Cigar Night and the Gala), his own personal fundraising, and the generosity of the Viola family, Tony was unofficially designated the #1 volunteer fundraiser in the Foundation’s sixty-plus years.

Tony is committed to helping those with thalassemia live long and normal lives and to continuing to build upon efforts that are leading to a cure for thalassemia. He is also committed to ensuring that CAF has the financial resources needed to accomplish these goals.

The National Executive Director

Craig3aCraig 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. Mr. Butler himself 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) to help 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

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.