Children's Cardiomyopathy Foundation, Inc.
Rating: 4.94 stars 99 99 reviews 3,925
P.O. Box 547 Tenafly NJ 07670 USA
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.
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.
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Reviews for Children's Cardiomyopathy Foundation, Inc.
The CCF is very first organization I reached out to after my sons diagnosis 8 years ago. Here I connected with other parents in similar situations. The support and lifesaving information has been invaluable to us!
I can't believe it's already been so long, but 6 years ago when we received our diagnosis for our son who has cardiomyopathy, Children's cardiomyopathy foundation was the first place I reached out to. I could not have made a better choice as they have been there to offer information and support. The community composed of affected families are wonderful and have definitely helped me cope along the way. Thank you, CCF!
I do not know what I would do without this invaluable resource! My fifteen year old son, Samson, was diagnosed last March with Dilated Cardiomyopathy. He is currently listed for transplant, and the support this organization provides for me and my family is irreplaceable. Through the Children's Cardiomyopathy Foundation (first recommended by Sam's cardiologist at Boston Children's Hospital), I have met over "heart moms and dads". Being able to connect with others who are going through similar terrifying experiences that you are helps to alleviate isolation. It also helps to keep me informed as to the latest innovations in treatment and research. I honestly do not know how I could manage this nightmare without the Children's Cardiomyopathy Foundation!
My son Thaddeus was born with complex heart defects for which he had multiple surgeries in his first month of life. Around 5 months old he developed cardiomyopathy and was given a very grim outlook.
I was so fortunate to find ccf. They helped me find drs and hospitals that had a specialist for dcm and provided much needed support and resources.
I was put on a listserv of parents whose children have cardiomyopathy and this, even 4 years later is where I hash out things from hospital stays, medical decisions, the emotional effects of medical trauma on my son (and myself). I don't doubt that without ccfs help my son would not be here today.
This is a lifesaving organization... if your child has ccf I'm so sorry that you are here, but so happy you have found us.
1 person found this review helpful
I came across this organization about 5- 1/2 yrs ago when my son was 1st diagnosed with LVNC. From day one this organization and the people who run it have been there every step of the way with my family and myself. With each milestone my son hit many of the women where there to give links to specific resources to use. The network is great and the families you meet along the way is amazing...Love this organization!!!!
This organization has brought awareness about heart conditions that are not common among the population.
CCF is such an amazing nonprofit. They offer amazing resources and support and I'm so thankful to be able to a part of this organization.
Awesome group full of resources! Their support and the parents' group were invaluable in the days and months after our daughter was diagnosed. Thank you, CCF!
My youngest was diagnosed at 9mon. Old that was 21 years ago. Then I found out my oldest child also had Cardiomyopathy. I thought I was going to lose it but then I found out about the children's Cardiomyopathy Foundation and I got alot of questions answered
I don't know where I would be without CCF. In the early days of our sons life when we were plagued with unanswered questions, needs for doctors and specialists, and people to listen and help. We found All that and more in the ccf community. From message boards to events, they
Led us to a doctor that put our son on a course to a "normal" life with cardiomyopathy. We are forever greatful.
1 person found this review helpful
When my daughter was born and diagnosed at birth with DCM nineteen years ago there was no place to turn for support. Every pediatric cardio support group we tried was always focused on congenital heart issues. And then the Yues created CCF. Suddenly I met parents from all over the world through the listserve, and we discussed symptoms and new drug trials. I felt hopeful. As the organization grew my online friend group also grew. I was able to meet some of those families in person. Having a chronically ill child can be isolating, CCF gave me a safe place filled with amazing people. On top of that they wrote detailed school protocols I shared with my child's school which they used to create policy. This non-profit works tirelessly to raise funds for promising research. If it wasn't for CCF many of the medical interventions for CM that are routinely used today would not even be available. I consider CCF to be as essential to the survival of our daughter as our favorite cardiologist.