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2016 Top-Rated Nonprofit

Children's Cardiomyopathy Foundation, Inc.

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Nonprofit Overview

Causes: Health, Heart & Circulatory System Diseases & Disorders, Medical Disciplines Research, Pediatrics

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.

Community Stories

107 Stories from Volunteers, Donors & Supporters

Francisco L.

Volunteer

Rating: 5

Great.
Make possible a share of experience all around the world between parents of kids with Cardiomyopathy.
Other side of the institution is that CCF is involved in investigations in this area.

Crystal96

General Member of the Public

Rating: 5

We love CCF and especially the online community. It is an invaluable resource full of information, support, and hope for pediatric cardiomyopathy families.

Previous Stories

Client Served

Rating: 5

The best resource for parents with a child struggling with cardiomyopathy. I'm so grateful for the information, support, and connections with other families.

Lauren Bertolino S.

Client Served

Rating: 5

Such a useful tool and community. My daughter has LVNC which is pretty rare so it is nice to find research on here and other families to connect with.

Laura van K.

General Member of the Public

Rating: 5

This organization was a life preserver for me as I navigated through the initial loneliness of coping with my baby's hypertrophic Cardiomyopathy diagnosis. They sent me a package of information and support, they guided me to the online community and that is where I found others who were enduring similar circumstances. I know this organization has also funded research that our daughters own Cardiologist has contributed to. They are a wonderful and needed voice for these children with this terrible disease. They deserve a big thanks!

Meribeth H.

Client Served

Rating: 5

This organization has provided us with extremely helpful information regarding our son's DCM diagnosis. We feel fortunate to have found this group and are very thankful for the support they provide. Through this organization we have become more informed and able to ask more in depth medical questions about our son and the care he receives. Invaluable!

Previous Stories

General Member of the Public

Rating: 5

Very thankful I found this organization after my son was diagnosed with DCM. It was a very scary time with so many unknowns. From the minute I found the Children's Cardiomyopathy Foundation, there was a sense of relief, others had walked this journey and were willing to share it. All the medical information was extremely helpful too, I have learned a lot and am very grateful.

Tricia C.1

Client Served

Rating: 5

When my 15 year old son was diagnosed with DCM we had no idea what was going on or where to look for information. CCF sent us helpful information and added us to the facebook group where we could find families who have the same issues.

Client Served

Rating: 5

This organization is just amazing, founded by a mom who lost 2 children to this terrible condition; CCF provides guidance and information to parents, as well as a community where we can help each other by sharing stories and asking questions; they even have a program to assist people whose insurance is over the limit and show true financial need in treating their child's cardiomyopathy. I am thankful I came across CCF.

Donor

Rating: 5

This group does amazing things! There is so little support for kids with cardiomyopathy and this group is outstanding!

Kristi P.

Client Served

Rating: 5

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!

Previous Stories

Client Served

Rating: 5

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!

Cindy222

Client Served

Rating: 5

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!

Client Served

Rating: 5

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 Kit B.

General Member of the Public

Rating: 5

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!!!!

Alejandra7

Client Served

Rating: 5

This organization has brought awareness about heart conditions that are not common among the population.

Maggie55

Volunteer

Rating: 5

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.

General Member of the Public

Rating: 5

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!

Stephanie266

General Member of the Public

Rating: 5

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

Client Served

Rating: 5

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

Client Served

Rating: 5

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.

Gayle22

General Member of the Public

Rating: 5

I became aware of this organization after my granddaughter was diagnosed with cardiomyopathy. They provide great resources and support. A great place to go for info.

Wendy158

General Member of the Public

Rating: 5

When my son was first diagnosed with HCM I had no idea what it meant. As soon as I got home that day I looked up more info about the disease I found most of the informative and correct information was from Children's Cardiomyopathy Foundation. The added bonus comes from the support of all the parents and caregivers who are in the group.