Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
42 Reviews
1234.928575
Previous | 1 2 3...5 |
Write A Review
September 2, 2014

more

September 2, 2014

CCF is an amazing foundation

They have helped, provided information, listended and guided when need be

Recieving a CM diagnosis is not easy as a parent, and CCF is amazing at supporting, advocating, providing information etc.

They are an amazing company!
September 2, 2014

more

September 2, 2014

When our son was diagnosed with HCM at 3 months old, we were completely devastated and lost. We felt very alone and of course took to the internet for help. We found CCF and a whole world opened up to us. Not only information but also support groups, doctor lists, people to call for help, and a whole community of people to share information with. We have been so impressed with how organized this group is and how hard they persevere on their mission to help kids with Cardiomyopathy. I can not recommend CCF highly enough.
September 2, 2014

more

September 2, 2014

CCF was quick to welcome our family after the diagnosis of our son. We were welcomed to the Facebook family, where we can share our experiences and learn from each other. Our questions and concerns are acknowledged and answered by parents and professionals. I'd highly recommend this group for funding and support so that they can continue to help families in need.
Thank you
July 13, 2013

more

July 13, 2013

After our daughter's diagnosis CCF was a great source of information. Our daughter was 3 at diagnosis and we often visit the List Serve for questions and answers. I find both to be a wealth of information. The list serve is a great place to post questions and have real parents answer with their experience. I use CCF as my second source of information - only second to our pediatric cardiologist on staff at Lurie's Childrens Hospital. By the way CCF supports further education to cardiologists which my daughters cardiologist has highly recommended. I will continue to support CCF and all their efforts. I especially support pre-testing for ALL ATHLETES. Thank you CCF.

More feedback...

Will you volunteer or donate to this organization?

Unsure

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

A lot

When was your last experience with this nonprofit?

2013

July 12, 2013

more

July 12, 2013

I am a pediatric cardiac nurse. My primary role has been to coordinate the care of children affected by cardiomyopathy. CCF is a lifeline for parents and medical providers. Once a child is diagnosed with this rare condition I immediately link them with CCF because I know they will find an abundance of resources to help them learn about the disease and obtain support from other families affected by it. They are truly one unified source of accurate information about the disease, current trends in treatment and ongoing research.

CCF is committed to raising awareness, education and furthering research in the field and its impressive to see how much they've achieved at such a rapid pace. CCF's tireless effort and dedication to the pediatric cardiomyopathy community is truly admirable and commendable.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

July 12, 2013

more

July 12, 2013

CCF provides a valuable service to families and the community that is not available elsewhere. It offers opportunities for education and emotional support to families with fragile children who are coping with enormous stress and challenges. Keep up the good work!!

More feedback...

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?

2013

July 12, 2013

more

July 12, 2013

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!

Ways to make it better...

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

(there isn't anything I would change)

More feedback...

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

July 11, 2013
2 people found this review helpful

more

July 11, 2013
2 people found this review helpful

Cardiomyopathy is a rare disease in children. I didn't even know what it was when my daughter was diagnosed at 8 months. CCF was a lifeline for us. They provided information and resources all in one place, making the job of educating ourselves about this illness much less daunting. They also connected us to other parents battling the same illness, providing us with a built-in support group that made us feel much less alone.
My daughter died at 15 months, but I still do my best to help other families still on this journey. I want to help find a cure. And CCF is helping me to do both things. I can't think of a better way to honor my daughter's memory.

More feedback...

When was your last experience with this nonprofit?

2013

July 11, 2013

more

July 11, 2013

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!!

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?

2013

July 11, 2013

more

July 11, 2013

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.

Ways to make it better...

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.

More feedback...

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

Previous | 1 2 3...5 |
Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers