Children's Cardiomyopathy Foundation
Children's Cardiomyopathy Foundation is a 501(c)3 nonprofit organization focused on raising awareness of cardiomyopathy and advocating for the needs of affected children and their families. Founded by Lisa Yue, a determined mother who lost her two children to the disease, CCF is dedicated to finding causes and cures for pediatric cardiomyopathy through research, education, awareness and advocacy. For additional information on CCF’s work, you can visit their website at www.childrenscardiomyopathy.org.
It is estimated that 30,000 children have cardiomyopathy, which is comparable to the number of people with cystic fibrosis. What many do not realize is that cardiomyopathy is the leading cause of sudden deaths and heart transplants in children under the age of 18 .Because the disease may present itself without obvious symptoms, cardiomyopathy often goes undiagnosed.
Every dollar counts and every dollar makes a difference. This “silent disease” has received little public attention and it remains severely underfunded by federal sources and pharmaceutical companies given the severity of the disease.However, with CCF-funded research, progress is being made in understanding the disease and improving survival rates for children with cardiomyopathy.
It is estimated that 30,000 children have cardiomyopathy, which is comparable to the number of people with cystic fibrosis. What many do not realize is that cardiomyopathy is the leading cause of sudden deaths and heart transplants in children under the age of 18 .Because the disease may present itself without obvious symptoms, cardiomyopathy often goes undiagnosed.
Every dollar counts and every dollar makes a difference. This “silent disease” has received little public attention and it remains severely underfunded by federal sources and pharmaceutical companies given the severity of the disease.However, with CCF-funded research, progress is being made in understanding the disease and improving survival rates for children with cardiomyopathy.
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The Children's Cardiomyopathy Foundation is the only organization in the country whose primary focus is pediatric cardiomyopathy, the Foundation takes a leadership position in broadening the understanding of the disease. The Foundation plans to be a funding partner and the primary advocate for studies into the causes, diagnosis, treatment, and cure of pediatric cardiomyopathy. The Foundation hopes to also fill the void in physician and patient education and support.
The Foundation's policies and activities are overseen by a Board of Trustees comprised of business professionals as well as philanthropists and volunteers. A Medical Advisory Board consisting of acknowledged leaders in the field of pediatric cardiology provide high-level medical and scientific guidance on the Foundation's research goals and priorities. The Foundation is active in four main areas: (a) research, (b) physician and patient education, (c) public awareness and advocacy, and (d) family support. 
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The vision of the Children's Cardiomyopathy Foundation (CCF) is to create a future of hope in which pediatric cardiomyopathy can be detected earlier and any affected
child can be cured to live a full and active life. Our mission is to accelerate the search for a cure by stimulating and supporting promising research on pediatric cardiomyopathy, by educating and assisting physicians and patients on the complexities of the disease, and by increasing awareness and advocacy on behalf of affected children and their families. Our mission is accomplished through: Research: Encourage and guide laboratory and clinical research aimed at improving survival rates and finding a cause and a cure for pediatric cardiomyopathy. Education: Serve as an international source for disseminating information on the early detection, comprehensive diagnosis, and effective treatment of pediatric cardiomyopathy. Advocacy & Awareness: Generate widespread awareness of the disease among government, medical, and lay communities to promote increased focus and funding on research. Support: Provide informational and emotional support to foster a cohesive and caring community of pediatric cardiomyopathy families. |
