Over 1.8 million nonprofits and charities for donors, volunteers and funders

Children's Cardiomyopathy Foundation, Inc.

Rating: 4.9 stars   60 reviews 3,458

Nonprofit Issues:

Health

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.

2014 Top-Rated Nonprofit
Write a Review
Donate
Invite Reviews Share This Nonprofit

More Info

http://www.childrenscardiomyopathy.org

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Reviews for Children's Cardiomyopathy Foundation, Inc.

Rating: 5 stars  

We came to personally know of CCF when our 8 year old daughter, Brianna, was diagnosed with Restrictive Cardiomyopathy (RCM). After exhaustive searches, both web based and formal academic research, we realized there is very little information presently about RCM and limited knowledge of pediatric cardiomyopathy in general. CCF has been a trail blazer for the field in providing awareness, support and advocacy for children and families facing these life-threatening diseases. Our beloved Brianna was taken by RCM in May of 2014 and did not survive to transplant, and in this past year CCF has provided us with much comfort and hope for the future of pediatric cardiomyopathy. It is a much needed organization for children and families.

 
Flag review
Rating: 5 stars  

Such a great charity for heart babies and they're families! !! They are a world of support, guidance and resources! We could not get through this without them!! Thank you Childrens Cardiomyopothy Foundation! - Lena Gonzalez and Family

 
Flag review
Role: Professional with expertise in this field
Rating: 5 stars  

This organization does a great job of helping families with children affected by cardiomyopathies. It helps them get the support they need, introduces them to other families facing the same issues, and it helps fund research which is the only way that we will ever find a cure to end these diseases which can destroy families. Also, they help provide financial assistance to families who are facing large medical bills from having such sick children.

A great organization!

 
Flag review
profile
Role: General Member of the Public
Rating: 3 stars  

I need help my Son is a disable Vet he is 34 and got out of the Army and we found out he has cardiomyopathy and the valve is closing quickly all the VA is doing is Beta blockers he has internal bleeding 8years a large hernia next to his heart and needs all his teeth pulled. We cant afford to have them pulled I need help is there anyone that can help us..please I pray
a tearful Mom

 
Flag review
sgibbons (Nonprofit Staff) wrote:

Hi Rose, Thank you for reaching out. We are very sorry to hear about your son. I hope that he has found the care and services he needs but if you are still looking for resources, I would suggest visiting this site: http://www.rarediseases.org/rare-disease-information/resources-tools/financial-med-assistance. It has a list of various links and organizations that may be able to assist you. I hope this is helpful. Sending our best wishes to you and your son. Warmly, Gina Peattie Manager of Patient Outreach & Support gpeattie@childrenscardiomyopathy.org

Review from Guidestar
Rating: 5 stars  

My daughter was born with dilated cardiomyopathy. Heart transplant at Stanford in 2012. Thank you for the awareness you are raising. I am so proud of this non profit. Thanks again

 
Flag review
Rating: 5 stars  

1 person found this review helpful

When my daughter was diagnosed with pediatric dilated cardiomyopathy it was an extremely scary time. The next several years were very challenging coming to grips with the fact that DCM has no set course. No one can tell you which course your child will take, whether they will live a life free from childhood death, constant illness/hospitalizations, a heart transplant or other complications that can arise, or if they will do well on medications and watchful eyes. The Childrens Cardiomyopathy Foundation literally saved my life,, I found a community there who offer support when sorrow is consuming on occasion. A community who understand the unique challenges of raising a heart kid, and who are always there to cheer a family on or lift them up in prayers. Its a cardiomyopathy judgment free zone for us parents. On top of the emotional support they have created, they are the major champions of research in finding causes and cures for our kids. They distribute funds more appropriately, and offer tons of resources for schools and the public about this all too often heartbreaking disease. By far one of the best run nonprofits I have researched!!

 
Flag review
1 previous review
Rating: 5 stars  

A wonderful organization with top to bottom support in all areas. Not only an informational, research based organization but one that has turned their small group of families into ONE LARGE family.

You can find reliable, factual information on your childs form of cardiomopathy, access grant and research information, and find doctors that specialize in pediatric cardiomyopathy. There are forms/support brochures to help fill out paperwork for your child entering school which is a HUGE source of parental worry when dealing with our children.

MY favorite part about the Childrens Cardiomyopathy Foundation beyond the well rounded effort to find cures and develop better outcomes and life expectancies for our children, is the 24 hr. support group of parents online whenever you need them. Lisa Yue and her team have developed something very special and whenever you're scared or have a question the listserve IS ALWAYS there to lend a hand. I am truly amazed at what a small foundation has accomplished in the lives of affected families, it's truly a gift!!

I've personally experienced the results of this organization in...

Going from a family of five healthy people to a family unsure of how long your youngest child will live is a tumultous experience to say the least. Pediatric cardiomyopathy is very rare and finding support and doctors familar with it can be difficult on your own. The Children's Cardiomyopathy Foundation was instrumental in knowledge of the disease and support from the other families who are living the same life. It is a hard one, but with this foundation you can see light amidst the darkness:)

If I had to make changes to this organization, I would...

The only change I would make to this organization is to win the lottery so that I could offer massive financial support on top of what they are already doing to find a cure, to improve the mortality rates of our children, and increase awareness of pediatric heart disease and organ donation.

 
Flag review
Rating: 5 stars  

CCF is a great resource and source of strength for families dealing with Pediatric Cardiomyopathy. We are honored to be donors, volunteers and part of the CCF family. CCF will always be there for Cardiomyopathy families in need.

 
Flag review
Rating: 4 stars  

My daughter was diagnosed with Dilated Cardiomyopathy at 7 months old in 2003. I instantly jumped on the Internet to get as much information as possible. CCF immediately caught my attention. At the time I signed up it was very new, really just in its infancy. But, already chock full of information. As my daughter waited for her transplant I would go back again and again to check up on what was happening. They have been with us every step of the way including the time of great sadness for our family as Aryanna lost her fight August 31, 2014. CCF is still in our corner being part of our support system as we navigate this new path. And, as we check every two years on her brother we hold our breath that he will escape this dreaded disease, but knowing we have someone in our corner no matter what the future holds for our family.

 
Flag review
Rating: 5 stars  

1 person found this review helpful

When my daughter was 2 and a half, she had some strokes, and was subsequently diagnosed with Dilated Cardiomyopathy. Her heart was enormous, causing the slow blood flow that formed a clot and caused her strokes. I was completely floored, and it was one of the worst times of my life. CCF was there for me every step of the way, giving me hope and information that I so desperately needed. I am one who feels that if I am fully informed and educated, I can better "control" the situation. When Madi got her heart transplant, they were in contact to let me know that they were thinking of our family.
Then when my other daughter got diagnosed, and my world fell apart yet again, CCF was there to pick me up off of the floor. She too got a heart transplant, and both girls are doing well. Having two children with significant medical needs takes a toll in so many ways, and when our finances went down the drain, who was there to help? Yep, Children's Cardiomyopathy Foundation. Their family grant gave my family the boost we needed to regain a foothold in our finances.
I have also gained many friends through CCF. I can't say enough wonderful things about them, and I recommend them to everyone I hear has CM.
CCF is an absolute must for any parent or caregiver trying to navigate the scary rollercoaster ride that is cardiomyopathy.

 
Flag review
1 previous review
Rating: 5 stars  

This was the first support group I found following my daughter's diagnosis. When my world came crashing down around me, it was CCF that picked me back up. It helped to have all their information to read at my leisure, and it made me not so scared to go forward.
I am now a CCF Parent Ambassador, reaching out to other parents whose children have cardiomyopathy and it has forged lifelong friendships that I cannot imagine being without. We love Children's Cardiomyopathy Foundation!

I've personally experienced the results of this organization in...

Supporting my family! We don't know where we would be without CCF!

If I had to make changes to this organization, I would...

Find a way to give them more $$ to be able to continue with their fabulous work, and perhaps expand to have a few different chapters throughout the country.

 
Flag review
Rating: 5 stars  

CCF has been a valuable resource for thousands of families facing the challenge of having children with cardiomyopathy. We have two children with this condition, and CCF is the one we turn to when we are looking for trusted information. The foundation advocates and helps fund medical research in the area of pediatric cardiomyopathy. Before CCF existed, research was limited in pediatrics and geared more towards adult cardiomyopathy. The founder, Lisa Yue, has changed that. We are beyond appreciative for all the foundation has done to find out more about finding a cure for this disease.

 
Flag review
1 previous review
Rating: 5 stars  

I have two children with cardiomyopathy, and I will never forget the day that I read that I read that there was actually an organization out there dedicated to children with this disease! Before I found CCF, I had been feeling very isolated. There weren't any families that I knew of that even knew what the disease was, and CCF connected me with hundreds of families that could relate to what we were going through. While there were other organizations that gave information about adults with cardiomyopathy, at the time, there was little or no information about children. I have been a part of this organization for almost 10 years and have seen what it has done for my family and thousands of other families. CCF has funded much needed research and provided us with support and resources. I also have researched many non-profits when deciding which ones to donate to, and when I researched CCF, I found it had high ratings because it is run with integrity. Our family is grateful for CCF's support and we will always do anything we can to help them on their mission to find a cure!

If I had to make changes to this organization, I would...

(there isn't anything I would change)

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

 
Flag review