Achievements

CCF Fact Sheet

The Children's Cardiomyopathy Foundation (CCF) continues to make an impact in the medical, healthcare, and patient communities. Since CCF's establishment, pediatric cardiomyopathy is attracting the attention of more researchers, and there has been a four-fold increase in the number of pediatric cardiomyopathy studies supported by the National Institutes of Health.

CCF is consistently rated as a top non-profit by America's leading charity evaluators GreatNonprofits, CharityNavigator, and GuideStar. The Foundation's work was documented in an article, "From Partnership to Progress in the Field of Pediatric Cardiomyopathy," published in Progress in Pediatric Cardiology.

To learn more about CCF's achievements over the years, click on the links below.

Research
  • Partnered with the American Heart Association on a Pediatric Cardiomyopathy Research Award to encourage more investigators to study the disease.
  • Partnered with the American Academy of Pediatrics to establish an Early Career Research Award to train the next generation of pediatric cardiomyopathy researchers.
  • Funded more than 50 research studies at top medical centers, leading to more than 260 medical publications and presentations on pediatric cardiomyopathy.
  • Advocated for the development of a scientific statement on cardiomyopathy in children, which was subsequently published in the American Heart Association’s journal, Circulation.
  • Partnered with the National Institutes of Health-funded North American Pediatric Cardiomyopathy Registry to support working groups and multi-center studies on the disease.
  • Organized the first international scientific conference on children with cardiomyopathy with the National Heart, Lung, and Blood Institute as co-sponsor.
  • Secured 11 dedicated issues featuring 131 articles on pediatric cardiomyopathy in Progress in Pediatric Cardiology, some of which were the most downloaded articles in the history of the medical journal.
Education
  • Established an Accredited Centers of Care program to identify high-quality cardiac centers that specialize in pediatric cardiomyopathy.
  • Collaborated with the American Heart Association, National Society of Genetic Counselors, Pediatric Heart Transplant Foundation, and the National Organization for Rare Disorders to develop educational materials on pediatric cardiomyopathy.
  • Developed educational materials such as Understanding Pediatric Cardiomyopathy and CardioWhat? A Kids' Guide to Cardiomyopathy in English and Spanish to distribute to hospitals in the U.S. and Canada.
  • Created Ensuring a Good Learning Environment: A Cardiomyopathy Resource Kit for School Personnel and Parents to educate school staff on the disease and guide families in securing school accommodations and modifications for their child.
  • Produced informational videos such as Secrets of the Heart – Living with Pediatric Cardiomyopathy and Know Your Heart: Genetic Testing for Cardiomyopathy Families.
  • Distributed more than 58,000 pieces of patient materials to families, hospitals and schools.
  • Established an ongoing presence at more than 15 national and regional medical conferences, including the American Heart Association, American Academy of Pediatrics, Child Life Council, Pediatric Cardiology Nurse Association, Pediatric Cardiology Society, and American College of Medical Genetics.
Awareness and Advocacy
  • Secured additional funding for cardiomyopathy research under the Department of Defense Peer Review Medical Research Program.
  • Launched the inaugural Children’s Cardiomyopathy Awareness Month with support from members of Congress and 13 national partners.
  • Worked with legislators to introduce the Cardiomyopathy Health Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act, in the U.S. House of Representative and the Senate.
  • Consistently secured report language on cardiomyopathy in the Senate Labor, Health, and Human Services appropriations bill to ensure that federal agencies stay focused on pediatric cardiomyopathy.
  • Took a leadership role in drafting the Supporting Athletes, Families and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act, which was introduced in the U.S. House of Representatives and the Senate and covered cardiovascular risk factors and safety related to youth sports.
  • Included cardiomyopathy specific language in the Every Child Achieves Act of 2015, which encourages local educational agencies to use state funding for programs that address cardiac conditions such as cardiomyopathy.
  • Served as a steering committee member on the Sudden Cardiac Arrest Coalition comprised of 46 organizations focused on primary and secondary prevention of sudden cardiac death.
Family Support
  • Grew CCF membership to over 3,300 families from 77 countries, and respond to more than 3,000 inquiries a year from families seeking assistance.
  • Hosted the first family conference, Living with Cardiomyopathy, in partnership with the Children’s Hospital of Philadelphia and Penn Medicine.
  • Formalized a Pediatric Cardiomyopathy Comprehensive Care Program at the Children's Hospital of New York to offer integrated services and expert care management in the tri-state area.
  • Expanded support services for families to include phone and online support, community discussion groups, parent ambassadors, expert Q&A sessions, and educational webinars.
  • Launched a care bag program at 15 hospitals to support families and children experiencing an extended hospital stay.
  • Created a Family Assistance Program to assist qualifying families in need of financial support for cardiomyopathy-related medical and non-medical expenses.
  • Issue a bi-monthly newsletter, Heart to Heart, that provides 6,000 subscribers with updates on research, family resources, and Foundation-related activities.

 

 

 

 

Financials   

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The Children's Cardiomyopathy Foundation is a 501 (c)(3) non-profit recognized by the U.S. Internal Revenue Service.
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