Our son was diagnosed with Dilated Cardiomyopathy when he was 14 years old. He seemed perfectly healthy so this was a surprise and shock to us. CCF has helped us in several ways. First, it is so wonderful to communicate with other families who have had similar experiences. That way, we do not feel alone. Second, CCF is a great resource for information on the disease and also for hospital and doctor references. Finally, I am happy that CCF is continuing to advocate for children with cardiomyopathy.
My son has hypertrophic cardiomyopathy and an AICD. By staying connected with CCF, I've had access to so many resources. The newsletter is full of recent research findings. I've participated in informational webinars that I would not have had access to otherwise. I've connected with parents across the country whose children are experiencing similar things and have received reassuring emails and been given great ideas for coping! And now that my son is about to graduate high school I've turned to CCF for resources about transitioning to adulthood.
CCF does so much for the Cardiomyopathy families. My daughter was diagnosed in vitro and we wouldn’t be here at her 6th birthday without the CCF. From
Their forums, to their information on hospitals, to their resources. They’re truly great!!
An amazing non profit that we continually support! EAC Foundation raises money each year for CCF. Everyone has been so helpful in navigating and providing supplies for our little non profit. Thank you for all you do!
An amazing foundation with a strong leader who lost 2 sons to cardiomyopathy. This should be the first stop for people who want to understand what children's cardiomyopathy is, how to cope with it and how you can seek family support. The foundation also raises money to fund cutting edge research into cardiomyopathy. I highly recommend!
Dylan was born with Dilated Cardiomyopathy (unknown causes). We would’ve been absolutely lost without the CCF private message boards. It is so hard to find fellow cardiomyopathy families. We first found them through a friends recommendation. Not only did they provide us with support. But they also have a wealth of resources that make this journey easier. Guidance documents on everything from making their school environment cardiomyopathy friendly to how to deal with heart failure and transplant. They stay with you the entire journey and then some. They are truly one of the best supports we have had.
The grants they fund are readily available via their website. When you make a donation to CCF, you know exactly where it is going. There are few other non-profits I can say that about.
Dylan has journeyed from cardiomyopathy to transplant and is doing great today. He is a wonderful student and athlete.
CCF has given us hope and information along the way. They are really a great nonprofit! Thank you for all you have done for Dylan and our family.
(Dylan pictured here with his first gold medal from the Transplant Games of America in 2018.)
I’m not exaggerating when I say that the Children’s Cardiomyopathy Foundation saved not only my son’s life but mine as well. I have been involved with CCF almost from the time it began. My son, Nathan, was diagnosed with dilated cardiomyopathy over 21 years ago- before CCF existed. My husband and I felt so alone. Living in a small town in Oklahoma, we didn’t know anyone who had dealt with anything remotely similar. When we finally found CCF on the internet Nathan was nearly 5 years old. Through CCF we found out how important it was to find a cardiologist who specialized in pediatric cardiomyopathy. The doctor Nathan had been seeing wasn’t treating his disease accurately and CCF gave us the name of a doctor who is one of the best for this disease. We credit this doctor with saving Nathan’s life several times. CCF also gave me the support system that I desperately need to help with the struggles of having a child with this disease. As much as my friends and family want to understand, they just don’t. The parents I have met through CCF help me keep going when times are tough. Nathan is now a junior in college and even though technically he is no longer pediatric, I will always stay involved with the Children’s Cardiomyopathy Foundation.
Our son was diagnosed with idiopathic (ie. unknown reason) Dilated Cardiomyopathy at 1 month of age by the children's hospital in Chicago. This hospital, which is CCF-accredited and has collaborated in its research efforts, rapidly recognized that his form and progression of cardiomyopathy required him to be listed for heart transplantation.
While we were waiting for his new heart, we participated in the CCF online discussion community and drew from CCF educational resources so that we could become better informed about this terrible condition which had affected our young son. Having these resources proved to be invaluable as a coping mechanism.
After transplant, we found that CCF didn't "let go" (unlike some other "pre-transplant" support organizations) and that we were in company with community members and staff members who understood our issues. We decided that this organization was so helpful that we have volunteered time and contributed money to further its cause and "pay it forward" to families like our own.
One key aspect is that the genesis for National Pediatric Transplant Week, which celebrates kids like ours (and - importantly - their donors!) was an idea that originated with CCF. This concept, which benefits all pediatric transplant candidates and recipients, is an opportunity for families to tell their stories and to encourage adults to register as organ donors, as well as to make families in general aware of the world of transplantation.
Fantastic nonprofit for our 15 year old son with DCM. They offer support, encouragement and knowledge to help point us in the right direction when so many things can be uncertain when it comes to a child with heart ❤️ disease. So thankful for CCF!!
Children's Cardiomyopathy Foundation has been my go to for support, resources, and peace of mind when ever feeling overwhelmed! My son Ardian was diagnosed with Hypertrophic Cardiomyopathy when he was just a few months old and has just turned 18. Information and resources were very limited when he was first diagnosed, thankfully we came across CCF to help us learn and handle my son's heart condition. CCF has helped us not feel alone and open up doorways to communicate with others going through a similar situation. Thank You CCF!
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!
When my newborn daughter was diagnosed with hypertrophic cardiomyopathy I didn't know where to turn. Her cardiologists suggested getting involved in a local support group sponsored by CCF. That was 16 years ago. Throughout my daughters life CCF has been there with informational materials for me to share with her school, friends and family members, connection with other parents of affected children and the support I needed all along the way. They are a top notch organization and I am thankful every day for the work they do.
My daughter has dcm, she is as diagnosed five years ago at only 4 months old. She got a big improve and is having a normal life but at the beginning she was in bad shape. CCF was there right from the beginning to support my family and give us information about our daugter’s condition. I always say that this foundation and their members are like family. We are from Argentina, so the job they do is huge around the world. I’ll be ever thankful for CCF.
When our son was diagnosed with Hypertrophic Cardiomyopathy in 2000 when he was in kindergarten we were in a fog. We had no idea where to go for accurate information. We were told about the Children's Cardiomyopathy Foundation. We learned so much. We were connected with other parents, doctors advancing in various studies and endless information. It meant so much to have information to learn more about his disease. Our son is 25 years old and doing well. We will forever be grateful for the continued information from this amazing organization.
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.
Our baby girl born May 29, 2017 was suddenly diagnosed September 12, 2017 with 2 forma of Cardiomyopathy. She was fast tracked to the heart transplant waiting list but passed away on September 29, 2017...the day she turned 4 months old.
This community has helped us through this loss and grief. It's a community that feels like family and a place that provides so much support. I don't know where I would be without them.
They have helped educate me on Cardiomyopathy when so many know so little about it. We had so many unanswered questions yet they continue to provide answers to many questions, support and a community of people that understand.
They have given me light when I was in complete darkness. They do so much for so many people and families like mine. I am thankful for them♡
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.
CCF was a life saver in the early days of our daughter’s HCM diagnosis. It’s been ten years that we have traveled this path and the connections I’ve made through CCF are with me every single day! I’m so grateful for all they’ve done to spread awareness, fund research and create a platform to connect families who provide invaluable support to one another!
CCF has been a great resource to our family for many years. My daughter was diagnosed at age one with HCM. The information provided to us has been extremely helpful especially during the period of time surrounding her open heart surgery.
I have utilized Children’s Cardiomyopathy Foundation as my go-to resource and support for 7 years and it has never led me astray. Excellent resource!
Wonderful foundation that shines a light on cardiomyopathy heart conditions in children. These conditions aren’t common and evolving in understanding among the experts. Support for these children living with their heart condition is warmly given by this foundation.
So much support and help navigating this scary disease
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.
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.
This group does amazing things! There is so little support for kids with cardiomyopathy and this group is outstanding!
The CCF is very first organization I reached out to after my sons diagnosis 8 years ago. Here I connected with other parents in similar situations. The support and lifesaving information has been invaluable to us!
I can't believe it's already been so long, but 6 years ago when we received our diagnosis for our son who has cardiomyopathy, Children's cardiomyopathy foundation was the first place I reached out to. I could not have made a better choice as they have been there to offer information and support. The community composed of affected families are wonderful and have definitely helped me cope along the way. Thank you, CCF!
I do not know what I would do without this invaluable resource! My fifteen year old son, Samson, was diagnosed last March with Dilated Cardiomyopathy. He is currently listed for transplant, and the support this organization provides for me and my family is irreplaceable. Through the Children's Cardiomyopathy Foundation (first recommended by Sam's cardiologist at Boston Children's Hospital), I have met over "heart moms and dads". Being able to connect with others who are going through similar terrifying experiences that you are helps to alleviate isolation. It also helps to keep me informed as to the latest innovations in treatment and research. I honestly do not know how I could manage this nightmare without the Children's Cardiomyopathy Foundation!
My son Thaddeus was born with complex heart defects for which he had multiple surgeries in his first month of life. Around 5 months old he developed cardiomyopathy and was given a very grim outlook.
I was so fortunate to find ccf. They helped me find drs and hospitals that had a specialist for dcm and provided much needed support and resources.
I was put on a listserv of parents whose children have cardiomyopathy and this, even 4 years later is where I hash out things from hospital stays, medical decisions, the emotional effects of medical trauma on my son (and myself). I don't doubt that without ccfs help my son would not be here today.
This is a lifesaving organization... if your child has ccf I'm so sorry that you are here, but so happy you have found us.
I came across this organization about 5- 1/2 yrs ago when my son was 1st diagnosed with LVNC. From day one this organization and the people who run it have been there every step of the way with my family and myself. With each milestone my son hit many of the women where there to give links to specific resources to use. The network is great and the families you meet along the way is amazing...Love this organization!!!!
This organization has brought awareness about heart conditions that are not common among the population.
CCF is such an amazing nonprofit. They offer amazing resources and support and I'm so thankful to be able to a part of this organization.
Awesome group full of resources! Their support and the parents' group were invaluable in the days and months after our daughter was diagnosed. Thank you, CCF!
My youngest was diagnosed at 9mon. Old that was 21 years ago. Then I found out my oldest child also had Cardiomyopathy. I thought I was going to lose it but then I found out about the children's Cardiomyopathy Foundation and I got alot of questions answered
I don't know where I would be without CCF. In the early days of our sons life when we were plagued with unanswered questions, needs for doctors and specialists, and people to listen and help. We found All that and more in the ccf community. From message boards to events, they
Led us to a doctor that put our son on a course to a "normal" life with cardiomyopathy. We are forever greatful.
When my daughter was born and diagnosed at birth with DCM nineteen years ago there was no place to turn for support. Every pediatric cardio support group we tried was always focused on congenital heart issues. And then the Yues created CCF. Suddenly I met parents from all over the world through the listserve, and we discussed symptoms and new drug trials. I felt hopeful. As the organization grew my online friend group also grew. I was able to meet some of those families in person. Having a chronically ill child can be isolating, CCF gave me a safe place filled with amazing people. On top of that they wrote detailed school protocols I shared with my child's school which they used to create policy. This non-profit works tirelessly to raise funds for promising research. If it wasn't for CCF many of the medical interventions for CM that are routinely used today would not even be available. I consider CCF to be as essential to the survival of our daughter as our favorite cardiologist.
I became aware of this organization after my granddaughter was diagnosed with cardiomyopathy. They provide great resources and support. A great place to go for info.
When my son was first diagnosed with HCM I had no idea what it meant. As soon as I got home that day I looked up more info about the disease I found most of the informative and correct information was from Children's Cardiomyopathy Foundation. The added bonus comes from the support of all the parents and caregivers who are in the group.
When diagnosed with an "adult disease" as a pediatric patient (8 days old) even the doctors were looking at information for adult patients. Here is where Childrens cardiomyopathy foundation came into play. The only information we as parents could find, came from them. They were a life line to not only us, but our doctors.
My 5 year old son was just recently diagnosed with Dilated Cardiomyopathy. After hearing the diagnosis and kind of being in shock, our doctor recommended that we look up the Children's Cardiomyopathy Foundation. They have been a great source for accurate information as well as a great place for parents to connect and support one another. It's really comforting to be a part of a community, that shares something so difficult, in common.
My daughter (my second child) was diagnosed at 9 weeks old with cardiomyopathy and her father and I felt at sea without an anchor or a map. CCF was a port in this storm. A great source of information but also a way of connecting people who although often live miles and miles apart geographically - share experience and understanding of what it is to walk this road with your children and family. Thank you. Not sure what we would have done without you.
Very thankful to find the CHildren's Cardiomyopathy Foundation. Our daughter was very recently diagnosed with HCM and the online info was very scary. CCF's website was very informative, along with the great materials they sent in the mail! Best part is the community of other parents and people affected by cardiomyopathy were I can ask questions and get answers from people with real life experience. Thank you!
In 2007, my newborn son was diagnosed with cardiomyopathy and spent his first three months in the hospital. My husband and I were lost on so many levels, isolated, overwhelmed, and scared. Each day, we did our best to educate ourselves on the disease but really struggled. I vividly remember the day I met another parent of a child with cardiomyopathy. I felt this huge sense of relief that someone else "got it." Not only did she share her own experience with me but also introduced me to CCF. As I explored the website, connected online, and got involved with different forums, I felt like a door to my heart was openings and the deep fog of isolation began to clear. My family has been on an absolute rollercoster with the disease but having the resources CCF provides makes each day a little better! I am forever grateful to everyone who has worked to make this organization what it is! It has been life changing for me! Kate M
Great source of information for families, schools, and communities with children of Cardiomyopathy. I applaud the awareness they are bringing to this disease.
My son, age 7 was recently diagnosed with Left ventricle non compaction cardiomyopathy. Once I had the diagnosis, I reached out to Children's Cardiomyopathy Foundation for resources on finding a physician that specialized in LVNC. In all honesty I would be lost without having this organization to help me with lodging, financial assistance and general questions. They have been prompted on responses to me and helped me understand this new journey I am on with with my son. Cardiomyopathy is a scary world to enter, CCF has been a tremendous asset to me with resources to give to teachers and also to be able to connect to other parents with children who have cardiomyopathy. It is so important to be able to have a support system, this is exactly what CCF is too me.
Thanks for all of the helpful information. I didn't know much about heart disease when my son was diagnosed and I am grateful for all of the help and information
My son has Cardiomyopathy and I love this group. Their is a lot of information and others that are going through what my family is going through it's a great support group
CCF has been a great support to us! It's been so good to have the support that we need in caring for our son.
My son was diagnosed with cardiomyopathy almost 6 years ago. Ccf have helped us so much. With support and also with excellent literature for pre-school and primary school.
Cardiomyopathy is a very rare and very serious disease. When my son was first diagnosed at 4 months old I had never heard of it. I was devastated and frightened and did not know where to turn for information and support. I found the ccf website and was welcomed with open arms by parents who had been through what I was going through. they sent me information about the disease for family, teachers and our doctor. easy to read and understand. ccf always let us know whenever there is any new hope for a cure for this horrible disease. I would be lost without the kindness and advice of others who have gone through this before me.
Finding out your child has a fatal rare condition was very difficult. Knowing that your not alone makes a world of a difference. CCF takes a personal/educational approach and they provided resources through such a difficult time. They not only have information for cardiomyopathy but heart transplantation, which was our only option for our child. They are making a difference, and it's an organization that truly has walk this path, they understand.
Children's cardiomyopathy foundation is a life changer and provides so Many resources for us all. Our life wouldn't be the same if we hadn't found this wonderful foundation!!