Children's Cardiomyopathy Foundation, Inc.
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October 9, 2012
The CCF Community has been amazing as a support for our family as we are coming to terms with our baby's rare heart diagnosis. Through this, we have been able to connect with other parents whose children share her condition.
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How would you describe the help you got from this organization?
A lot
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
October 8, 2012
In 2006, I discovered CCF. I found answers to many of my questions about pediatric cardiomyopathy on their website. Through their list serve, I finally found out that I was not alone; there were other families that were enduring the same daily struggles that I was. They have equipped me with not only knowledge and hope for my child's survival, but also they have given me the tools I need to fight for my son's needs at school. CCF is amazing organization. Thanks CCF!
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
1 person found this review helpful
July 10, 2012
1 person found this review helpful
My granddaughter was diagnosed with DCM as an infant. CCF has been helpful to the whole extended family in providing answers and encouragement. I've appreciated the newsletters that keep me up to date on the latest research that's being done. CCF has also given us a way to feel like we're helping find a cure by helping with some fundraising for this worthy organization.
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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?
2012
July 10, 2012
My son was diagnosed with severe dilated cardiomyopathy at 9 years old. We were totally stunned and at a loss for what to expect and how to move forward. The internet has so much information ( most of it scared us to death). Finally a nurse friend recommended CCF. It was an immediate life changer for us. CCF listserve gave us immediate connections with other families facing the same challanges. Through the listserve we obtained information about doctors, hospitals, financial help resources and many other things. The monthly guest on the listserve is an amazing resource. Most importantly for our family- we have met other CM families and not only found support, but have made life long friends. We are a very thankful family that CCF is there for us. And that is only on the personal level. Where do you begin to give thanks for all the support they have given to the "professional" world of CM through research grants and such?
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
July 10, 2012
My son was just recently diagnosed with LVNC at age 17 and CCF has been a great source of support for my family.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
1 person found this review helpful
July 10, 2012
1 person found this review helpful
I appreciate the role CCF has played in our family. My granddaughter was diagnosed with dilated cardiomyopathy as an infant. She is now 5 years old. CCF has been a lifeline of information, sanity and connections for my daughter and her husband. I know all the support has been encouraging for them. We are so thankful your organization exists.
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
July 10, 2012
My daughter was diagnosed with a devastating, life threatening type of cardiomyopathy at age 5 months. I was isolated by the dearth of knowledge available, both with the medical personnel,in medical literature and with regular people I encountered. I knew no one going through anything similiar. Then, in a doctor's office waiting room, I saw a magazine called The Exceptional Parent; in it was a tiny add for the CCF. I contacted them that day and have been member ever since, at no cost. My daughter received a heart transplant at age 13--in 2007--and the CCF team and members have been my primary support, emotionally and for practical disease-related information. My daughter, now 18, is now a Teen Ambassador for CCF. I cannot timagine what we would have done without the agency.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
1 person found this review helpful
July 10, 2012
1 person found this review helpful
My granddaughter and her family have been dealing with the tragedy of cardiomyopathy for the five years of her young life. The support CCF has provided my son and daughter-in-law has been invaluable to their mental health, acceptance, and support system in dealing with this situation. A wonderful place to share and to learn and to gather strength. Thank you!!
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
A lot
When was your last experience with this nonprofit?
2011
July 9, 2012
i can't think of anything in life that prepares you for the shock that is experienced when your child is diagnosed with a life threatening condition. CCF was our primary resource for learning...oh wait, life does go on with this disease, there is a normalcy that will return to our lives. CCF was our connection to both information to understand all of the new medical terminology we needed to be well versed in, but also, and perhaps most importanly, connecting us to other families that have direct experience with our medical needs/questions, thereby allowing us to feel not so alone in our new life circumstance. CCF has been a huge benefit to us, and run so efficiently and respectfully. Thank you CCF!
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
July 9, 2012
My daugher was diagnosed with Cardiomyopathy last December. This was the nly place I could find good answes to my questions. Through this site I also found other parents who understood exactly what I was going through when no one ele could understand. I also found a ton of s support when Cardiomyopathy took my daughters life at one week shy of 9 months of age.
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012