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Children's Cardiomyopathy Foundation, Inc.

Rating: 4.91 stars   70 reviews 3,735

Address:

P.O. Box 547 Tenafly NJ 07670 USA

Mission:

The Children''s Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic and potentially life-threatening heart disease that can affect children of all ages regardless of gender, ethnicity or socio-economic background. CCF is dedicated to finding causes and cures for pediatric cardiomyopathy through the support of research, education, awareness and advocacy.

Programs:

As the first national group focused specifically on pediatric cardiomyopathy, CCF is involved in all aspects of the disease from research and education to patient support, awareness and advocacy. CCF's work involves * Catalyzing research and promoting education * Advancing treatment models * Providing leadership and advocacy in the pediatric community * Offering child and family assistance More than $1.5 million has been committed to research and treatment initiatives, and CCF has led the way in establishing a biologic specimen repository and planning the first international scientific conference. In the process, CCF has partnered with the National Heart, Lung and Blood Institute, American Heart Association, National Society of Genetic Counselors and the National Organization for Rare Diseases. 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.

2015 Top-Rated Nonprofit
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More Info

http://www.childrenscardiomyopathy.org

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Reviews for Children's Cardiomyopathy Foundation, Inc.

Rating: 5 stars  

1 person found this review helpful

I first found Children's Cardiomyopathy Foundation 12 years ago when my daughter was born with Hypertrophic Cardiomyopathy. Through their educational materials, their online forum, and their support groups, I learned so much about life with an HCM child, I made friends, I felt less alone. I can't imagine getting through the past 12 years without CCF being there.

 
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Rating: 5 stars  

2 people found this review helpful

From the day we found out our 6mo old daughter had dilated cardiomyopathy we searched for answers...both from doctors and others who have lived it.

Throughout my daughters precious 4 years of life we lived a life not many can relate to. This organization was immensely helpful and we finally felt like we were not alone.

We lost our daughter last year due to heart failure. One more child to the list of "gone too soon" due to this devastating condition.

We cannot thank CCF for all their love and support over the years. It made this difficult journey a little bit easier. -The Miller's

 
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Rating: 5 stars  

When my son was diagnosed I was lost. We went from one surgery and he'd be fine to he might not live and needed transplant.
They were willing to answer any/all questions and help us find drs who were experienced with the disease. They connected us with other families and gave us a forum to learn, vent and be at peace.

 
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Rating: 5 stars  

Great resource for parents with a child struggling with this disease. I'm grateful for the information and support provided.

 
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Rating: 5 stars  

2 people found this review helpful

Such a great group! Beyond friendly during our walk on sept. 27th.

 
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Rating: 5 stars  

This charity truly advances research on cardiomyopathy cures and causes while also supporting families that are affected by the disease. It was a nice place to work that was really fiscally responsible and effective.

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

Great organization!!so helpful to the families!thank you!!
#lenastrong

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

As a mother of a 14year son diagnosed with HCM at 4 months old, this was one of the only organizations I found to be very resourceful & helpful in the knowledge of childhood cardiomyapathy! CCF is truly a great "go to" for anything related to pediatric HCM & other Cardiomyapathies! Thank You CCF!

 
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Role: General Member of the Public
Rating: 5 stars  

What a great source of knowledge and support for children's cardiomyopathy. My daughter's cardiologist sent us home with a pamphlet from this organization and that led us to their website. It's such a relief to know that there are others going through the same things that we go through everyday. Thank you!!!

 
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Rating: 5 stars  

2 people found this review helpful

Participated in the walk in September for Children's Cardiomyopathy and what a great bunch of people they are. Very welcoming, Understanding and striving to help our little heart warriors and their families survive and thrive! They couldn't wait to meet my granddaughter and it was amazing how they all knew her story!

 
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