The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit 501(c) (3) organization focused on pediatric cardiomyopathy, a chronic and potentially life-threatening heart disease. Considered one of the most severe pediatric heart diseases, cardiomyopathy is the leading cause of heart transplants and sudden deaths in children. As the only public interest group for this heart disease in children, CCF is committed to accelerating the search for cures while improving diagnosis, treatment and quality of life for those affected by pediatric cardiomyopathy.
CCF was founded in 2002 by a parent who lost two young children to cardiomyopathy. Recognizing the need for better support and more research, CCF was established with the purpose of stimulating and funding promising research on the disease, educating and assisting physicians and patients on the complexities of the disease, and increasing awareness and advocacy related to the needs of affected children and their families.
Based in Tenafly, New Jersey, CCF actively works with federal, private and corporate organizations to advance research and medical knowledge on this heart condition. Guided by a distinguished medical advisory board, CCF also provides information and support to more than 2,000 physicians and 1,000 families worldwide. CCF strives for the day when every child with cardiomyopathy can be cured to live a full and active life.
Programs CCF is active in four main areas: 1) research, 2) education, 3) awareness and advocacy, and 4) family support. In the area of research and treatment, CCF provides seed funding through a national grants award program to investigators researching the causes and therapies for children with cardiomyopathy; supports the establishment of comprehensive care programs similar to the Children's Hospital of New York that CCF helped to formalize; maintains and promotes a national tissue and blood repository; collaborates on scientific publications; and plans scientific workshops.
To increase visibility and understanding of the disease, CCF launched a national patient education initiative, the "Parent Empowerment Program", which provides easy-to-read printed and electronic materials for diagnosed children, caregivers and medical practitioners.
CCF also offers family support services such as peer support, family matching, referrals to physician and clinical studies, a newsletter, a family member listserve and a website (http://www.childrenscardiomyopathy.org) with comprehensive medical and care information.
The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit 501(c) (3) organization focused on pediatric cardiomyopathy, a chronic and potentially life-threatening heart disease. Considered one of the most severe pediatric…