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 under the age of 18. It has been referred to as the “forgotten” disease because of its rarity and lack of medical progress, but since the establishment of CCF, research on pediatric cardiomyopathy has increased three-fold.
CCF was founded in 2002 by Eddie Yu and Lisa Yue, parents who lost two young children to cardiomyopathy. Recognizing the need for better support and more research, Eddie and Lisa 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. Since then, CCF has grown into a global community of families, physicians and scientists focused on improving diagnosis, treatment and quality of life for children with cardiomyopathy.
Managed by a small staff and guided by a medical advisory board, CCF is involved in all aspects of the disease. The Foundation has made great strides in bringing together experts from the scientific and medical fields to advance knowledge on pediatric cardiomyopathy and in developing support services for those affected by this disease. More than $2.3 million has been committed to research and treatment initiatives in the U.S. and Canada, and CCF has lead the way in establishing a biologic specimen repository, partnering with the federally funded Pediatric Cardiomyopathy Registry and organizing the first scientific workshop on pediatric cardiomyopathy.
CCF continues to be an invaluable lifeline to affected families providing information, resources and guidance. CCF's educational materials are now distributed to more than 70 hospitals in North America. Over the years, CCF has worked with many esteemed organizations including the National Heart, Lung and Blood Institute, American Heart Association, National Society of Genetic Counselors and the National Organization for Rare Diseases. 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.