The Children's Cardiomyopathy Foundation (CCF) is the leading nonprofit dedicated exclusively to pediatric cardiomyopathy. CCF's impact can be measured by the increased involvement of researchers and physicians and the expansion of research studies and publications on the disease. Since CCF's existence, there has been a three to four-fold increase in the number and dollar amount of pediatric cardiomyopathy studies supported by the National Institutes of Health.
CCF's value is also substantiated by the many grateful families who rely on the foundation for information, advocacy and support. CCF was named as a top-rated health non-profit for two consecutive years by America's leading charity evaluators GreatNonprofits, CharityNavigator, GuideStar and GlobalGiving. To view what families are saying about CCF, visit the GreatNonprofit site.
Funded more than 51 research studies at top medical centers across the United States and Canada through CCF's Research Grant program.
CCF-funded studies and research partnerships have lead to more than 165 publications in leading scientific journals and presentations at national medical meetings.
Partnered with the National Institutes of Health Pediatric Cardiomyopathy Registry in sponsoring multi-center research studies, working group sessions and disseminating study findings.
Established the first pediatric cardiomyopathy biological specimen (blood & tissue) repository to accelerate research on the disease.
Partnered with the American Heart Association in establishing a joint research grant program on pediatric cardiomyopathy 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.
Organized and cosponsored with the National Heart, Lung and Blood Institute the first international scientific conference on pediatric cardiomyopathy.
Secured six dedicated issues on pediatric cardiomyopathy in Progress in Pediatric Cardiology, a leading international medical journal. These CCF acknowledged articles on the disease were the most downloaded articles in the 20-year history of the journal.
Collaborated with the American Heart Association, National Society of Genetic Counselors and National Organization for Rare Disorders to develop educational materials on the disease.
Developed a series of patient education materials, including Secrets of the Heart – Living with Pediatric Cardiomyopathy DVD, Understanding Pediatric Cardiomyopathy booklet and inserts, and CardioWhat? A Kids' Guide to Cardiomyopathy, which are distributed to 80 hospitals in the U.S. and Canada.
Created a school resource kit, 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.
Distributed more than 32,000 pieces of patient materials to families, hospitals and schools.
Represented at more than 20 national medical conferences, including the American Heart Association, American Academy of Pediatrics, American Society of Transplantation, Child Life Council and American College of Medical Genetics.
Awareness and Advocacy
Worked closely with legislators to introduce the first-ever cardiomyopathy bill, the Cardiomyopathy Health Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act, to both the U.S. House of Representative and the Senate.
Secured report language on cardiomyopathy in the Senate Labor, Health, and Human Services Fiscal year 2013 appropriations bill, which shows that Congress recognizes the importance of focusing on pediatric cardiomyopathy.
Featured in national and local media including The New York Times, Good Housekeeping and ABC News.
Serve as a steering committee member on the Sudden Cardiac Arrest Coalition, a national association of more than 46 nonprofit organizations focused on sudden cardiac arrest and promoting legislative initiatives to expand public awareness, research funding and access to life-saving therapies.
Formalized a Pediatric Cardiomyopathy Comprehensive Care Program at the Children's Hospital of New York to offer integrated services and expert care management to children and their families in the tri-state area.
Established a Family Assistance Program to ensure that low-income families have equal access to the medical services required for optimal care.
Grew CCF membership to 1,800 families from 52 countries worldwide.
Recognized as a trusted source for information and support, responding to more than 4,000 inquiries from families seeking assistance.
Publish a bi-annual newsletter, Heart to Heart, with a distribution of over 6,000.
Formed 13 family support groups in partnership with top medical centers across the United States.
Expanded patient support services to include telephone support sessions, on-line chats, parent and teen Facebook groups, a international community support forum and a regional ambassador program.