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!
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 ❤️
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
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.
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!
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.
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.
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!
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.
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.
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!
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!
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.
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.
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.
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%
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!
Make possible a share of experience all around the world between parents of kids with Cardiomyopathy.
Other side of the institution is that CCF is involved in investigations in this area.
We love CCF and especially the online community. It is an invaluable resource full of information, support, and hope for pediatric cardiomyopathy families.
This organization was a life preserver for me as I navigated through the initial loneliness of coping with my baby's hypertrophic Cardiomyopathy diagnosis. They sent me a package of information and support, they guided me to the online community and that is where I found others who were enduring similar circumstances. I know this organization has also funded research that our daughters own Cardiologist has contributed to. They are a wonderful and needed voice for these children with this terrible disease. They deserve a big thanks!
This organization has provided us with extremely helpful information regarding our son's DCM diagnosis. We feel fortunate to have found this group and are very thankful for the support they provide. Through this organization we have become more informed and able to ask more in depth medical questions about our son and the care he receives. Invaluable!
Very thankful I found this organization after my son was diagnosed with DCM. It was a very scary time with so many unknowns. From the minute I found the Children's Cardiomyopathy Foundation, there was a sense of relief, others had walked this journey and were willing to share it. All the medical information was extremely helpful too, I have learned a lot and am very grateful.
When my 15 year old son was diagnosed with DCM we had no idea what was going on or where to look for information. CCF sent us helpful information and added us to the facebook group where we could find families who have the same issues.
This organization is just amazing, founded by a mom who lost 2 children to this terrible condition; CCF provides guidance and information to parents, as well as a community where we can help each other by sharing stories and asking questions; they even have a program to assist people whose insurance is over the limit and show true financial need in treating their child's cardiomyopathy. I am thankful I came across CCF.