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2019 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: CCF's mission is to accelerate the search for causes and cures for pediatric cardiomyopathy through increased research, education, awareness and advocacy, and to support families whose children are affected by the disease.

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

129 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

My daughter has dcm, she is as diagnosed five years ago at only 4 months old. She got a big improve and is having a normal life but at the beginning she was in bad shape. CCF was there right from the beginning to support my family and give us information about our daugter’s condition. I always say that this foundation and their members are like family. We are from Argentina, so the job they do is huge around the world. I’ll be ever thankful for CCF.

Christine83

General Member of the Public

Rating: 5

When our son was diagnosed with Hypertrophic Cardiomyopathy in 2000 when he was in kindergarten we were in a fog. We had no idea where to go for accurate information. We were told about the Children's Cardiomyopathy Foundation. We learned so much. We were connected with other parents, doctors advancing in various studies and endless information. It meant so much to have information to learn more about his disease. Our son is 25 years old and doing well. We will forever be grateful for the continued information from this amazing organization.

Previous Stories

Client Served

Rating: 5

Our son was diagnosed at 5 years old with hypertrophic cardiomyopathy. He is now 20 years old. CCF has helped our family with tremendous resources. They give us hope of understanding the disease further through research. We do not know what we would have done without their continued support.

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Stephanie D.3

Client Served

Rating: 5

Our baby girl born May 29, 2017 was suddenly diagnosed September 12, 2017 with 2 forma of Cardiomyopathy. She was fast tracked to the heart transplant waiting list but passed away on September 29, 2017...the day she turned 4 months old.
This community has helped us through this loss and grief. It's a community that feels like family and a place that provides so much support. I don't know where I would be without them.
They have helped educate me on Cardiomyopathy when so many know so little about it. We had so many unanswered questions yet they continue to provide answers to many questions, support and a community of people that understand.
They have given me light when I was in complete darkness. They do so much for so many people and families like mine. I am thankful for them♡

Previous Stories
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General Member of the Public

Rating: 5

After our 4 month old daughter passed away on September 29, 2017 to 2 rare forms of Cardiomyopathy, it was this group that helped support me. This community not only helped support me through the darkest days of our lives, but they helped answer questions and educate me on something we had never even heard of until our daughter was suddenly diagnosed in September 12, 2017.
If it wasn't for this foundation and it's community....we would be lost. I cannot even find the words to express how grateful and thankful I am to be part of this CCF community. They help give me the strength I need to find purpose and make sense out of everything and help me keep going.

Erin Beck M.

Volunteer

Rating: 5

CCF was a life saver in the early days of our daughter’s HCM diagnosis. It’s been ten years that we have traveled this path and the connections I’ve made through CCF are with me every single day! I’m so grateful for all they’ve done to spread awareness, fund research and create a platform to connect families who provide invaluable support to one another!

1

Donor

Rating: 5

CCF has been a great resource to our family for many years. My daughter was diagnosed at age one with HCM. The information provided to us has been extremely helpful especially during the period of time surrounding her open heart surgery.

General Member of the Public

Rating: 5

I have utilized Children’s Cardiomyopathy Foundation as my go-to resource and support for 7 years and it has never led me astray. Excellent resource!

Erin N.3

Donor

Rating: 5

Wonderful foundation that shines a light on cardiomyopathy heart conditions in children. These conditions aren’t common and evolving in understanding among the experts. Support for these children living with their heart condition is warmly given by this foundation.

Nicole66

General Member of the Public

Rating: 5

So much support and help navigating this scary disease

Previous Stories

Client Served

Rating: 5

Our son was diagnosed with DCM at 3 weeks old... We were confused and upset to say the least!! CCF offered us support and education at a time we felt hopeless!! We are more than thankful we are now hopeful and enlightened!!

1 Gabrielle M.1

Volunteer

Rating: 5

Our son Harrison was diagnosed with Dilated Cardiomyopathy at 14 Months old. I found CCF’s Facebook page first and it brought me so much comfort while we were inpatient in the hospital to be able to connect with other families. Since then I have received tons of help and information from CCF, they have helped our family make the right choices for our sons health and we are so grateful!

1 carolyn149

General Member of the Public

Rating: 5

Christopher was diagnosed with DCM at 5 months old. I didn’t know what it was, only that it was very serious, rare, and had a 40% transplant/ death rate. I was petrified! Our doctor advised joining the Children’s Cardiomyopathy Foundation to get INFORMED information and it was the best thing I ever did. This organization is so wonderful ! They provide much needed support, and fund so many projects with the goal of making headway of this dreadful disease. Through them I have been in contact with so many others with affected children. We cry on each other’s shoulders and celebrate all the victories, big and small- and the CCF staff in right there, cheering and crying with us. God Bless them. Carolyn Cuneo ❤️

Previous Stories
1

General Member of the Public

Rating: 5

CCF is such a wonderful organization. When Cristopher was diagnosed in July at 5 months old with DCM, I felt so helpless. Then I came across their website and I started to feel like maybe I wasn’t so alone in this. When Christopher’s cardio team spoke so highly of them, I knew I was at the right place! The staff at CCF is so helpful , their goal is to make sure that every child, every family is embraced in this CM family. And it sure does feel like a family, not a foundation. I can’t say enough wonderful things about the caring and kind people who address your every need, make you feel welcome, and do their best to share in your victories and your sorrows. Thank you CCF for being a bright light in a sometimes very dark place. With love and thanks, Carolyn

1

Client Served

Rating: 5

CCF is a wonderful, organized community of patients, families and advocates connecting online and other ways to promote research and awareness for a lifelong chronic disease. It is helpful to know there are other families going through the same thing, supporting each other and trying to make a difference.

Previous Stories
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General Member of the Public

Rating: 5

My child was diagnosed with Dilated Cardiomyopathy as an infant. A heart transplant was eventually needed. CCF is a wonderful resource for families dealing with cardiomyopathy, transplants, etc. I am particularly excited about their support of research programs to help find treatments for this horrible disease. It is nice to have a group of people who know exactly how your feeling and what you deal with day to day! Great group, great people, great founders!

1

Professional with expertise in this field

Rating: 5

Through CCF I have participated in informative educational events in which cardiomyopathy experts make themselves available to answer questions. This is a very valuable resource.
As a provider (cardiovascular genetic counselor), I joined CCF to learn about real people dealing with cardiomyopathy in themselves or a family member, and to gain some familiarity with their issues and their experiences as patients and as members of their own healthcare team. Thank you, CCF.

Jessica I.

Client Served

Rating: 5

This group has brought me lifelong friends who are closer than family. They have so many great resources and connect us across the country to each other. The input and resources from this group have saved my daughters life as we helped to find her the best provider.

Previous Stories
1

Client Served

Rating: 5

CCF has connected me with a group of people who are in some ways closer than family because they understand the process I am going through. The group shared information regarding my daughter's disease that led us to seek out a specialist who has been pivotal in helping to diagnose her problems and give us hope of living with this disease for a very LONG time!

1 Lauren Bertolino S.

General Member of the Public

Rating: 5

This group is a great resource that I was so happy to find. My daughter was diagnosed with cardiomyopathy before birth and I was scrambling to find out more information. This foundation has so many supplies and information available. The community is also tight knit and supportive.

Previous Stories

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.

Kelly177

General Member of the Public

Rating: 5

Such an informative & supportive group! The best resources for pediatric cardiomyopathy patients & families! Thank you CCF for all you do for my son Ardian and all the other heart warriors!

Previous Stories
1

General Member of the Public

Rating: 5

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!

Client Served

Rating: 5

Amazing ! A life saver when my Son was dx with Cardiomyopathy . This foundation is where I turned and found all the education and support I needed to keep my head above water.

Client Served

Rating: 5

Since the day of my daughter’s diagnosis last year, CCF has been in our lives. We are lucky to be five minutes from a Center of Excellence in treating CM and the literature they provided to us that day was provided generously from the CCF. The support and education have been invaluable to us as we navigate this new path. It’s ver my reassuring to know they are out there fighting for research and laws to help the cardiomyopathy population.

Norma C.1

Client Served

Rating: 5

Without Children's Cardiomyopathy Foundation I would be so lost. Our family is currently residing in a developing country, where highly specialized medicine is non existant. With he help of CCF's resources, I have found a specialist who has helped us out by giving second opinions, and have gotten information on how to best manage the disease. I cannot praise enough how hard the Foundation works to keep its members informed and to make sure every one of us feels supported.

Lindsey K.1

General Member of the Public

Rating: 5

I LOVE CCF!!! They are such a valuable resource for anyone who’s child has been dignised with cardiomyopathy!!! They have been very helpful since my son was diagnosed with DCM when he was 3 months old!!! The CCF community makes you feel like you aren’t alone, and it ends up feeling like one big extended family!!!!

I also love all of the information and email chats with leading doctors in the field!!! This is one of my favorite aspects!

I recommend CCF 200%

1 Mdbruce

General Member of the Public

Rating: 5

I love CCF and its staff! I lost my daughter last year to hypertrophic cardiomyopathy and CCF has been so supportive and helpful for me. The online community both facebook and CCF connect community are great. The bereaved forum on CCF connect has helped me connect with other bereaved parents who are now apart of my life forever. I also spread awareness to others in my community and CCF is always very helpful in providing me with all the resources , material and information I need to educate myself and others about the disease. CCF is the only foundation that I reached out to that gave me genuine response and real support and I just love them all so much for that!