The Children’s Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy – a chronic and potentially life-threatening heart disease. Often under diagnosed, cardiomyopathy is the leading cause of sudden deaths and heart transplants in children. It is sometimes referred to as the “forgotten” heart disease because of its rarity and lack of medical progress, but since the establishment of CCF, pediatric cardiomyopathy is starting to get more attention from researchers, physcians, and the National Institute of Health.
CCF was founded by Eddie Yu & Lisa Yue, parents who lost two young children to cardiomyopathy. Recognizing the need for better support and more research, the Yus established CCF with the purpose of stimulating and funding promising research on the disease, educating and assisting physicians and patients, and increasing awareness and advocacy related to the needs of affected children and their families.
Managed by a small staff and guided by a medical advisory board, CCF reaches out to more than 2,000 physicians and 1,000 families worldwide today. As the only public interest group on pediatric cardiomyopathy, CCF remains committed to accelerating the search for a cure while improving diagnosis, treatment and quality of life for children with the disease. In pursuit of this mission, CCF has funded research studies, established an interdisciplinary treatment program at the Children’s Hospital of New York, and sponsored scientific think tanks with the federally funded Pediatric Cardiomyopathy Registry. CCF has also taken a leadership role in establishing a biologic specimen repository, developing more patient education materials, and organizing the first scientific workshop on pediatric cardiomyopathy. It is the Foundation’s continued hope that more lives will be saved and and every affected child will have the chance to live a full and active life.