Children's Cardiomyopathy Foundation gives so much hope to children battling cardiomyopathy and their families. They are committed to raising awareness, providing support, and funding research. Their team is so helpful and connects you with others in the same situation as your child. CCF has transformed lives in so many ways.
Fantastic non-profit dedicated to supporting pediatric cardiomyopathy research, educating parents on the disease, and connecting families to foster a sense of community amongst those caring for children with cardiomyopathy!
I have been involved with children cardiomyopathy Foundation for over 10 years , since my daughter was diagnosed with RCM at age 9. She is now 21. Back in the early days when we were first getting diagnosed and dealing with all of the ins and outs of everything, I don't know how we would have made it without the support and love that were shown by the other members.
This organization runs an amazing support group that is so needed when most people have never heard of what you're dealing with. They also host very helpful and informative webinars on various topics throughout the year. So thankful for CCF!
Such a great support system that we have needed! They made groundbreaking research known to us that may not be aware of. Lifesaving daily!
Awesome organization doing great things for kids with heart disease. I loved volunteering for them to raise funds and awareness. I will do another bake sale for heart kids in the future!
Great organization! Thanks for all you do for the cardiomyopathy kiddos. You provide great ressources and confort!
Amazing organization that works tirelessly to provide educational resources and support to families navigating their child's cardiomyopathy.
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Wonderful non-profit! The CCF guided me to the correct people when I had questions about my daughter's cardiomyopathy as well as supported our own non-profit, The EAC, with providing us with resources and tons of knowledge! Forever grateful!
CCF is an amazing non-profit. They have been an amazing resource for my son and the
entire family as we have been on the obstructive HCM journey. It's so nice to have an
organization that has experience and an understanding with heart support. We appreciate the support we have with CCF knowing that they are there for us.
CCF is a wonderful resource for families who are navigating the complicated world of pediatric cardiomyopathy. We were put in touch with them when our son was diagnosed with HCM shortly after birth and they have been a part of our "village" for the past (almost) decade! They provide families with educational materials and up to date information on the latest research in the field, but also the opportunity to connect with each other, which can be otherwise challenging to navigate. They are simply the best!
CCF provides incredible support, resources and hope for kids with cardiomyopathy and their families. I could not care for my two boys with cardiomyopathy in the way that I am able had I not had the support and resources CCF provided. They are simply priceless.
Our family so appreciates this wonderful organization that provides great support for families dealing with a cardiomyopathy. Our son diagnosed at age 7 in 2017. since we joined CCF, this group has provided valuable of educational information and resources for us to better understand my son's condition. Additionally, CCF provides the opportunities that allow families to connect, support, and learn from each other. Great foundation and much appreciation!
CCF is a great resource and they are always willing to help in any way they can. They have been a great support system.
Our baby girl born May 29, 2017 was suddenly diagnosed September 12, 2017 with 2 forms 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.
Our daughter didn't have many options for care. Since so little is known about Cardiomyopathy, it was all trial and error. Her only hope was a heart transplant but her little heart was too weak and she ran out of time. Had more been known about her diseases, they may have been detected earlier, she may have had more time, she may have survived, but most of all, she may have had more options for treatment.
CCF is the only community and foundation that provides specific focus and attention on the disease. They do more than save lives and deserve so much recognition for all that they do.
There are not many people who are educated enough on this disease and so little research has been done. This needs to be changed!!! CCF provides education, awareness, and support. CCF continues to eliminate barriers which allow this disease to steal lives.
CCF 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♡
Our family so appreciates this wonderful organization that provides much needed support for families dealing with a cardiomyopathy diagnosis. CCF provides a wealth of educational information and resources to better understand the condition. Additionally, the organization provides an invaluable platform that allows families to connect, support, and learn from one another.
CCF helped our family when we needed help the most. When our son was born with DCM in 2008, we felt helpless and didn't know anyone else that had a child affected by cardiomyopathy. Through a chain of amazing friends, we found this group and I am so thankful we did. They provided community and support online. Plus, they provide a slew of educational resources that help you have conversations with your child's medical team and school team. They do an amazing job of making sure dollars are spent towards their mission.
I am a past CCF volunteer and a nonprofit partner supporting people with heart health problems. The Children's Cardiomyopathy Foundation, Inc. has been providing longstanding support for families, clinicians and research in the area of children's cardiomyopathy. Their resources and support are of great value to the affected community. Thank you for your great work, CCF!
Proud to be a member of this important organization. CCF is a valuable tool for families that want to understand pediatric cardiomyopathy, current research, and how to seek important family support. The foundation also raises money to fund much needed research into cardiomyopathy.
CCF has been a wonderful resource for our family. My son was diagnosed with HCM 3 years ago after cardiac arrest. He is in the wonderful hands of cardiologists at Vanderbilt Children's & LeBonheur. CCF has provided learning resources, but what we have loved is the connection with other families going through similar situations. It has been so comforting! The entire staff of the CCF has been outstanding and wonderful to work with. So grateful.
I participated in CCF's Walk for a Cure this year and really enjoyed it. I felt inspired by the work they are doing to find a cure for cardiomyopathy.
I attended a CCF event and was impressed with the mission of this organization. I will continue to support!
I volunteered and attended a CCF event and was impressed by their dedication to finding a cure for cardiomyopathy.
I volunteered at the Walk for a Cure and was able to learn about CCF's mission and work. I found them to be a great organization working hard for children with a difficult medical condition.
When our three-year-old son Gavin was diagnosed with Restrictive Cardiomyopathy in 2019, we felt the wave of questions wash over us as we endeavored to understand this new diagnosis. Gavin had already gone through four open heart surgeries to correct multiple CHDs, and was pacemaker reliant his entire short life thus far. But things seemed to be on the upswing for our strong little guy, and a new diagnosis at this point was a bit daunting to say the least.
It was our physicians who pointed us towards Children's Cardiomyopathy Foundation, as they knew this organization was full not only of helpful resources and detailed information for studying and better understanding this condition, but also with a community of families walking through similar journeys. For us, it has been the combination of endless resources available via their website, as well as this strong community of support, that has proven to be most helpful for our family. Having others share their personal stories - seeing alignment in what they've experienced and learning from questions that they ask - has been really eye-opening for us as we walk this path. And of course, knowing that there are others advocating for greater research into these conditions gives us hope for the future as well.
Children's Cardiomyopathy Foundation (CCF) has indeed been a blessing to my family since our daughter's diagnosis of LVNC. CCF has been a great system of support providing relevant information and resource to families. Connecting with CCF has definitely made this journey easier.
Joanna
The Children's Cardiomyopathy Foundation has provided critical support over many years to help advance the field of pediatric clinical research as it relates to cardiomyopathy. They have consistently supported research efforts through financial support, conference planning, dissemination of research findings, and countless others ways. They continue to bring together leaders in the field to ensure that this disease remains in the forefront of investigators' research goals. Without the Children's Cardiomyopathy Foundation, so many important discoveries simply wouldn't have been possible. It truly is an honor to collaborate with them to find better ways to manage and hopefully one day cure such a devastating disease.
Our baby girl born May 29, 2017 was suddenly diagnosed September 12, 2017 with 2 forms 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.
Our daughter didn't have many options for care. Since so little is known about Cardiomyopathy, it was all trial and error. Her only hope was a heart transplant but her little heart was too weak and she ran out of time. Had more been known about her diseases, they may have been detected earlier, she may have had more time, she may have survived, but most of all, she may have had more options for treatment.
There are not many people who are not educated enough on this disease and so little research has been done. This needs to be changed!!! CCF provides education, awareness, and support. CCF continues to eliminate barriers which allow this disease to steal lives.
CCF 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♡
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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♡
This is the first organization that I recommend to anyone who has a child with cardiomyopathy. When my son was diagnosed with DCM, CCF website was the place where I could find answers for all my questions and, what is the most important, a hope for the future of my son. CCF has also great videos on youtube that I watch regularly. Thank you CCF for the work you do!
I continue to appreciate CCF and the many resources I have available as the parent of a young adult with hypertrophic cardiomyopathy and an AICD. I am armed with knowledge to help my son make good decisions about his health so he can feel more empowered. Especially with the pandemic, we've turned to CCF for information about COVID-19's affect on cardiomyopathy.
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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.
My daughter was diagnosed with CDM when she was 3 months, we didn’t know anything about this disease, we were completely lost.We are so thankful of the Children’s Cardiomyopathy Foundation it’s been a great support trough all this process.
Children’s Cardiomyopathy Foundation - CCF- is the little engine that could. A small group of dedicated people who accomplish extraordinary things for these children. My Christopher was diagnosed with Dilated Cardiomyopathy in July of 2018, at 5 months old. We were told a few important things while in the PICU:
This is very rare
This is quite serious
Go to CCF for support & information
CCF has helped us so much in both of those areas, but more importantly for fighting the good fight for all children with Cardiomyopathy; for raising funds for research , educating politicians and the medical community, for tirelessly advocating for these littlest Warriors and their families. Thank you Lisa and staff, for being the voices of these children
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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 ❤️
My son was diagnosed in utero with cardiomyopathy. CCF gave me the information I needed to become informed on what cardiomyopathy is and the support groups to get through my darkest days. I am so appreciative to be connected to other families who have gone through and are going the same things my family is going through. I have learned so much along the way.
I was diagnosed with dilated cardiomyopathy when I was just six months old. Since then, CCF has been there every step of the way comforting my family. I am now 18 and you would never know I have this heart condition! This organization has people with a PURPOSE behind it. All of those involved are knowledgeable, gracious, and compassionate as they have experienced heartache no parent or family member or friend should ever feel. Keep up the good work! Every time I volunteered with CCF it was so fulfilling - I look forward to volunteering post pandemic! Thank you for everything you do!
After my baby girl was diagnosed at 4 months with severe HCM in 2019, I found CCF through a web search. I was amaze by how all her symptoms, as described in the information mail to me by CCF, line up with HMC for infants. Her symptoms were not recognized by her doctors who will tell me she was ok. It wasn’t until her four month well child being appointment that a heart murmur was heard. Unfortunately, she pass two months after her diagnosis February 2020. I thank CCF for the support proved after she die by connecting me with a fellow family that lost their baby girl before us.
My daughter was diagnosed with Restrictive Cardiomyopathy in January 2018. Hearing things like Cardiomyopathy and Heart Transplant is so scary and I started searching for any and everything about all things Cardiomyopathy. I came across this page and community and instantly felt like I wasn't alone in our one in a million condition.
Later that same year one of our twin boys suffered multiple cardiac arrests weeks after his first birthday. Both of my twin boys also had Restrictive Cardiomyopathy and also needed heart transplants. This organization is necessary for families like mine. For a condition with very little support, Children's Cardiomyopathy Foundation is a light for so many families.
Children's Cardiomyopathy Foundation is a wonderful place to find support and resources for your heart warrior and whole family. Our son Ardian was diagnosed with HCM at just a few months old in 2001. He has graduated high school this past June 2020 and is now attending online college. CCF has been a true blessing throughout our life. Thank you CCF and everyone who helps make this foundation possible!
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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!
Lmaher 03/13/2020
Thank you for your review! Can you please email me (lmaher@childrenscardiomyopathy.org) --I have a follow up question. Thank you!
The Children's Cardiomyopathy Foundation is such a wonderful resource for patients and their families. CCF provides a wealth of information that is both detailed and easy to understand. As a nurse practitioner working in the field of pediatric heart failure, I continually hear positive feedback from families who use the website to gain insight and knowledge about what is often a scary and unfamiliar diagnosis.
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.
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!!
Lmaher 03/13/2020
Thank you for your review! Can you please email me (lmaher@childrenscardiomyopathy.org) --I have a follow up question. Thank you!
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!!
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.
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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.
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.
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!
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.
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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.
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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!
Great.
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.
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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!
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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!
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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!!!!
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.
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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!!
Extremely enjoyable to work with, all employees were extremely helpful and attentive. A great company to work with. All were very dedicated towards the same cause.
I first found Children's Cardiomyopathy Foundation 12 years ago when my daughter was born with Hypertrophic Cardiomyopathy. Through their educational materials, their online forum, and their support groups, I learned so much about life with an HCM child, I made friends, I felt less alone. I can't imagine getting through the past 12 years without CCF being there.
From the day we found out our 6mo old daughter had dilated cardiomyopathy we searched for answers...both from doctors and others who have lived it.
Throughout my daughters precious 4 years of life we lived a life not many can relate to. This organization was immensely helpful and we finally felt like we were not alone.
We lost our daughter last year due to heart failure. One more child to the list of "gone too soon" due to this devastating condition.
We cannot thank CCF for all their love and support over the years. It made this difficult journey a little bit easier. -The Miller's
When my son was diagnosed I was lost. We went from one surgery and he'd be fine to he might not live and needed transplant.
They were willing to answer any/all questions and help us find drs who were experienced with the disease. They connected us with other families and gave us a forum to learn, vent and be at peace.
Great resource for parents with a child struggling with this disease. I'm grateful for the information and support provided.
This charity truly advances research on cardiomyopathy cures and causes while also supporting families that are affected by the disease. It was a nice place to work that was really fiscally responsible and effective.
What a great source of knowledge and support for children's cardiomyopathy. My daughter's cardiologist sent us home with a pamphlet from this organization and that led us to their website. It's such a relief to know that there are others going through the same things that we go through everyday. Thank you!!!
Participated in the walk in September for Children's Cardiomyopathy and what a great bunch of people they are. Very welcoming, Understanding and striving to help our little heart warriors and their families survive and thrive! They couldn't wait to meet my granddaughter and it was amazing how they all knew her story!
We came to personally know of CCF when our 8 year old daughter, Brianna, was diagnosed with Restrictive Cardiomyopathy (RCM). After exhaustive searches, both web based and formal academic research, we realized there is very little information presently about RCM and limited knowledge of pediatric cardiomyopathy in general. CCF has been a trail blazer for the field in providing awareness, support and advocacy for children and families facing these life-threatening diseases. Our beloved Brianna was taken by RCM in May of 2014 and did not survive to transplant, and in this past year CCF has provided us with much comfort and hope for the future of pediatric cardiomyopathy. It is a much needed organization for children and families.
Such a great charity for heart babies and they're families! !! They are a world of support, guidance and resources! We could not get through this without them!! Thank you Childrens Cardiomyopothy Foundation! - Lena Gonzalez and Family
This organization does a great job of helping families with children affected by cardiomyopathies. It helps them get the support they need, introduces them to other families facing the same issues, and it helps fund research which is the only way that we will ever find a cure to end these diseases which can destroy families. Also, they help provide financial assistance to families who are facing large medical bills from having such sick children.
A great organization!
I need help my Son is a disable Vet he is 34 and got out of the Army and we found out he has cardiomyopathy and the valve is closing quickly all the VA is doing is Beta blockers he has internal bleeding 8years a large hernia next to his heart and needs all his teeth pulled. We cant afford to have them pulled I need help is there anyone that can help us..please I pray
a tearful Mom
CCFheartkids 04/23/2015
Hi Rose, Thank you for reaching out. We are very sorry to hear about your son. I hope that he has found the care and services he needs but if you are still looking for resources, I would suggest visiting this site: http://www.rarediseases.org/rare-disease-information/resources-tools/financial-med-assistance. It has a list of various links and organizations that may be able to assist you. I hope this is helpful. Sending our best wishes to you and your son. Warmly, Gina Peattie Manager of Patient Outreach & Support gpeattie@childrenscardiomyopathy.org
Review from Guidestar
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
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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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!!
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.
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.
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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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!
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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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!
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!!!
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.
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!
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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...
When our son was diagnosed at the age of 9 with cardiomyopathy we were thrown into a tailspin. It was unimaginable that our beautiful, robust, healthy boy could possibly have a heart that was so sick. We were numb with shock and fear. A nurse at the hospital where I worked directed me to CCF. I am thankful every day. On the CCF listserve I found other parents who were dealing with many of the same things. I found a mom who had already travelled the paths I was just learning and gave me so much information and support. I have met, literally, several CCF parents on trips to heart camp or to see Dr. Towbin in Cincinatti because we put the word out on listserve or facebook and arrange to connect. How great it is to find friends who really "get it." It would never have happened without CCF. Then there is the help and information; where to find doctors, how to write school plans, how to advocate for your child. Listserve and chats with CM experts. So much information and support to help navigate the maze of cardiomyopathy. I cannot imagine this journey without CCF and all the friends they have connected me with.
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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?
My daughter was just dignosed with DCM in April of 2014 at 12 years old I was devastated I was told about CCF and right away I signed up to be a member they set me up with a wonderful person who I can email or call at any time for support and let me know about reading materials I could get to give to my daughters school. I can email Gina @ CCF at anytime and she is always here to help. Parenets would be lost with out anywhere to turn when our lifes get turned upside doen by hearing the words your child has a seriuos heart condition Thank you for always being there.
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!
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.
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
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.
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.
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!!
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.
CCF has always been our go-to place for an education, support and overall caring regarding our son's cardiomyopathy. It is more than a non-profit; it is a family -- a family who has been through what your family is going through. I have met a few people who have dealt with cardiomyopathy issues and immediately refer them to CCF! I am not sure what I would have done without them after my son was born. A++++++ in my book!
Children's Cardiomyopathy Foundation strives daily to make a difference in the lives of those that are dealing with this rare disease. They are a constant source of support not only to the families, but also to researchers that are trying to improve the lives of those suffering from this disease. This is an excellent organization that seeks to improve every aspect of dealing with cardiomyopathy.
My daughter was diagnosed with LVNC at birth. CCF has been helpful to the whole family in providing information that we have not been able to find else where. I've appreciated the newsletters that keep me up to date on the latest research that's being done. .
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.
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!
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.
My son was just recently diagnosed with LVNC at age 17 and CCF has been a great source of support for my family.
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.
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.
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!!
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!
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.
CCF has been much more than a charity organization to our family, it's been a community. Everyone we have met through the network, employees, volunteers and other families have become a part of our family. Offering support, compassion and words of encouragement unconditionally. We are so blessed to know we are not alone on our journey and as our son (4.5 yrs) with HCM grows we know he too will not be alone and will have a network of others like him to grow with. Thank you CCF for the resources, network and community you have created.
CCF has been a true life-saver for our family. Their support network through the email group, Facebook page and in-person support groups have been instrumental to our family's "healing". They say it takes a village to raise a child, but it takes a community like CCF's to raise a heart kid. CCF has provided the groundwork for hundreds of families from all over the world to connect. We are forever grateful for their support and advocacy.
My son Ryan was diagnosed with Assymetrical Septal Hypertrophy which is a form of Hypertrophic cardiomyopathy at 8 wks. of age. We were dumbfounded to say the least. We always knew that my family had heart problems but it was not until we had Ryan that we learned the extent of this diseae. 12 years ago there was very little, if any information about this disease, let alone a Foundation that offered what CCF does.
The Children's Cardiomyopathy Foundation has been a God send to us! There are so many things that this organization has helped us with. Most importantly it has put me in touch with other cardiomyopathy families and made me feel like I am "NOT ALONE" in dealing with this disease. That in itself is the silver lining! Thanks so much for being there and all that you do!
CCF was a direct answer to my prayers. Being able to connect with an entire community affected by PCM is incredible. I have benefited from their literature, and online listserve. I am forever grateful for CCF! Words cannot adequately describe how vital this organization is to the families affected my pediatric cardiomyopathy.
CCF has been a critical resource for our family. When our baby was first diagnosed with acute congestive heart failure and Dilated Cardiomyopathy, the information CCF sent us was clear, concise and invaluable. We since joined the parent liserv which has been such an important resource for us emotionally, as well as being a source of critical information for how to deal with the daily challenges of living with this disease.
The School Handbook is phenomenal and we have already used it (our son is now in pre-school).
Incredible organization.
When our precious baby was diagnosed with DCM, we had so many questions and felt so alone. CCF was the light in the darkness that surrounded us. Here, we find answers to our questions and friends that can understand like no others. Heart disease is an every day strain in which new questions, issues, and triumphs constantly arise. CCF is always here for us. Besides the support that we and other families are thankful for, we hope that CCF will play a crucial role in new research to help find better treatments or even a cure for childhood cardiomyopathy.
My wife and I became aware of CCF after our daughter, Evangeline, was diagnosed with DCM. The whole organization and all the families involved have been a real blessing and encouragement to our family. Since DCM is relatively rare, just having a network of other people from around the country to share tips, advice, & support has been invaluable. All the people at the foundation that we've interacted with clearly and deeply care about all the kids and are wonderful to work with. Can't recommend this group highly enough.
My son was diagnosed with Barth syndrome and DCM, he got a new heart when he was 3.5 months old. This group is a great way to help navigate through the constant questions and worries that come with having a family affected by cardiomyopathy.
When my son was diagnosed with DCM I searched the internet looking for answers. I had never heard of cardiomyopathy until the day my son was diagnosed. The hospital had very limited information available and most of the other children on the cardiac ward had heart conditions that could be repaired/improved via an operation. I was fortunate enough to stumble across the CCF website and became a member of the forum straight away. The forum has helped me get through this tough stage in our lives and it is great to talk with other families who "get it" they understand EXACTLY what I am feeling. I have formed some fantastic friendships due to the forum with Mums both in Australia and the USA. I am so pleased that I found CCF as I don't know how I would have survived without it!
After losing my 1st and 3rd sons for different reasons my 4th child was born and all was well, until at 4 months old he was diagnosed with Dilated cardiomyopathy. I had never heard of this. This was more than I could bear and I felt singled out, but determined that I would not lose another child. Months passed where he clung to life in PICU and finally a miracle came our way and Ethan received a heart transplant.
CCF has been a source of comfort, friendship and knowledge over the years. When you are at the bottom of the pit there are others that can lift your spirits because they know...
At other times it is wonderful to share knowledge and information across families that deal with so many different hospitals and doctors.
I am not alone.
My son Kevin was diagnosed at the age of 9 with Hypertrophic Cardiomyopathy. We were crushed. How do we deal with this? How do we help HIM deal with it? How do we get others to understand? What about school? Children's Cardiomyopathy Foundation answered those questions and more for us! Not sure how we would have managed such a heart breaking time in our lives without their help!! I spoke with the founder directly. She shared her story and listened to me cry & tell mine. I have NEVER met a more helpful, hands-on organization as CCF! I thank God everyday for them & everything they've done for us! ~Cori Detweiler
I have 3 children, including a set of twins, both born healthy. However my world turned upside down when one of my twins, Zara, at 3 months of age was diagnosed with idiopathic dialted cardiomyopathy, and was in severe end stage heart failure. I had taken her to numerous doctors for a couple of weeks to determine why she wasn't thriving and no one could help, no one had answers. This disease is a silent killer with few symptoms. That night she aas diagnosed in the ER, we were told our perfectly healthy looking baby may not live through the night. Cardiomyopathy was a word I had never heard before. Frantically while my daughter held on to dear life through feeding tubes, IVs, and electrodes taped all over her, I sat and researched what I could on the Internet kiosk vending machine in the hallway outside her ER feeding coins into a machine, trying to read through my haze of endless streams of tears any information I can on the disease. What I learnt was this- that cardiomyopathy is very different between adults and children. That causes of CM in children may be unrelated to causes of CM in adults. That there was NO information available to parents and families of children with CM that was relevant to them except one site, and only one~ that was the Childrens Cardiomyopathy Foundation. CCF has provided valuable information relevant to my daughter's condition and age, has put me in touch with other families with children with CM, has provided tremendous support, and without the wonderful work they do, I would have been lost. We need parents and healthcare prifessionals to become more aware of Cardiomyopathy in children, we need to find a cure for this dreadful disease, and mostly figure out what causes this disease in children so we can prevent further deaths. I am a supporter of CCF, this organization is invaluable to our family.
McRae family
Lmaher 03/09/2020
Thank you for your review! Can you please email me (lmaher@childrenscardiomyopathy.org) --I have a follow up question. Thank you!