Children's Cardiomyopathy Foundation, Inc.

Rating: 4.93 stars   56 reviews

Issues: Health

Location: 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
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Community Reviews

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

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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!!

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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.

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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.

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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.

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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.

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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.

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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.

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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

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Rating: 5 stars  

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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1 previous review
Rating: 5 stars  

Our son was diagnosed 13 years ago with hypertrophic cardiomyopathy. He is now 19 years old. I don't know what we would have done without the continued support and caring of the Children's Cardiomyopathy Foundation. They have helped us learn new information and gave us the opportunity to connect with parents going through similar circumstances. We have turned to CCF through every step of this diease and they give us hope. They are funding necessary studies to hopefully one day have further advances in treating this disease.

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

I would not do anything. They know what parents and patients are looking for and strive to achieve.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

As a Registered Nurse I've always known about cardiomyopathy. I didn't become familiar with pediatric Cardiomyopathy until my great niece was diagnosed at age 12 with dilated cardiomyopathy, and placed on the transplant list. I found the Children's Cardiomyopathy Foundation has a wealth of information for all people for all types of cardiomyopathy. The foundation has and is helping push through legislation, state by state, to help decrease sudden death in our school aged children. Helping to teach people of all ages about AEDs. How to locate them and more importantly how to use them. I cannot say enough about how important this foundation has been to me and my family personally but to all families dealing with this devastating cardiovascular illness.On a more personal note, my great niece received her gift of life after being on the list for 800+ days and is doing fantastic!!!

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Rating: 5 stars  

CCF provides my family and I hope as well as a sense of comnmunity. It provides a wealth of information and support to my little nephew and all his friends who have a future filled with uncertainty. Very grateful that this foundation exists.

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Rating: 5 stars  

CCF is such an incredible organization! When our daughter (now almost 5) was diagnosed at three months old we were in shock. CCF provided us with the invaluable knowledge that we are not alone! The list serve has been life changing! We are beyond grateful for the support, information and services provided as well as the dedication to funding further studies!

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

Find more ways to support parents with the psychological aspect of this disease.

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 5 stars  

When our daughter was diagnosed I couldn't see past my tears. We had been given so much information and felt almost hopeless. The social worker assigned to us by Lucile Packard Children's Hospital at Stanford recommended that we check out the Children's Cardiomyopathy Foundation. At some point I finally found the strength to find out more about CCF. I am so glad I did. We just passed the one year mark of the day our little girl was diagnosed and I know that this past year would have been immeasurably harder without the support of CCF. I found reliable information on their website, I felt inspired by the many families who hosted fundraisers, I felt HOPE when I saw that the money they raise is going toward research studies that could change the treatment of my daughter's disease, and I felt so much less alone when I began to take part in the forum where so many parents of children with Cardiomyopathy gather to support one another. CCF is an incredible non-profit for which I am indescribably grateful...

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

I have personally experienced the benefit of this organizattion in many ways... but feel especially thankful for the CCF Forum.

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

Ask for the formation of some sort of family gathering (on the West Coast, Mid West and East Coast) that was inexpensive to be a part of.

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