The Myocarditis Foundation is an inspiring institution. Its members have a huge positive impact in the myocarditis patient community. They not only give space for every patient's journey and needs to be heard, understood, and supported, but also connect patients with clinicians and relevant scientific breakthroughs. The Foundation has shown us how this thoughtful cross-talk between the patients, medical professionals, and investigators is vital to bring solutions to myocarditis patients and their families sooner.
Unfortunately, I found out about the Foundation like many of you did, a death of a perfectly healthy energetic child. The picture is Kamryn at her 1st birthday party, and she never got to have a second one. She was 16 months old and survived 16 hours after the virus attacked her heart. I was introduced to the Foundation because our daughter was trying to find answers and was looking up myocarditis on every search engine out there. By far, the Myocarditis Foundation site had more information than the others.
As I fast forward over the past 12 years of my association with them, here is why we continue to support. The Foundation provides necessary information to assist you in spreading the word about the disease, they offer you support in your efforts to get information out. They allow you access to the researchers trying to find a cause and a cure, and they are accessible. Over the years, I have personally spoken to the founders, Candace and Dr. Cooper and this is the only organization that I know of that allows access to their founders that I know of.
I make it a point to speak out whenever I have the chance especially to mothers who lost young children to Myo. I do this because I know what happens to them, I saw it in my daughter when she was trying to determine what she missed or what could she have done? The answer, absolutely nothing. No warning signs that will make you think something is horribly wrong. The Family Support Meetings are rewarding for me, Kamryn's mom won't attend anymore, but I still do just to see what's new in research. The last one, Kamryn's 17yo brother attended, he was only 5 when she left us. He had questions in trying to understand the disease process. I'm so thankful he was able to attend.
If you are looking for a way to make a difference, the Myocarditis Foundation can use your help, please consider!
Becky Wagner
Our strapping, athletic son, was diagnosed with Myocarditis at 21 years of age, just before the pandemic. Our entire family was stunned, confused and scared. The people at the Foundation responded immediately with kindness and understanding, giving us the information we needed to feel more comfortable and confident. They connected us with a specialist in Boston who saw our son within days. Knowing we have such a great resource that we can reach out to at anytime for support is a blessing.
I was diagnosed with the rare Giant Cell Myocarditis in 2016. It was quite scary and I was near death a few times. I made a great recovery and have returned to skiing and an active life style. The Foundation was extremely helpful, caring and giving to myself and my family. I will always be grateful for them.
Our daughter, Sarah, died unexpectedly from Myocarditis when she was just 25. She had no signs or symptoms of illness, taught school all day and died while working on lesson plans after school. We had never heard of Myocarditis and discovered the Foundation as a result of an internet search. Since that time we have received wonderful support and encouragement from the Foundation. We have made it our mission, to sustain Sarah's legacy, to raise funds to support the Foundation's research particularly for diagnosis and cure. The staff is amazing, supportive and inspirational. Dr. Leslie Cooper and Candace Moose, original founders of the Foundation, have been in direct contact with us and share the love and loss of our dear Sarah. This is an amazing charity helping fight the good fight for Myocarditis awareness, research and diagnosis.
Ben was 14 when he was diagnosed with giant cell myocarditis. I could tell while they were talking about transplants and other possibilities that even they were not sure how to proceed. I started researching and most did not give him much of a chance. In this research, I found the myocarditis foundation and reached out to them. They immediately responded with support and answered questions . Most importantly, Dr Cooper called and the doctors consulted as to treatment. He is now almost 21 and with his own heart. We could not have made it without the foundation! We felt so alone and confused. Ben didn't understand what was happening.
We are so thankful and grateful.
The Myocarditis Foundation is an excellent organization that is such a key source of information and resources when you or a family member has been diagnosed with myocarditis. I have chosen to support the organization ever since I was diagnosed with myocarditis back in 2017.
I was diagnosed in 2011 with Giant Cell Myocarditis and was very very sick with 7% heart function. Searching Giant Cell Myocarditis on the internet was very scary. The statistics were very very low and it and seemed as if a heart transplant was the only option of having any chance of survival. My husband happened upon the Myocarditis Foundation site and reached out to them. They were immediately responsive and because of their research and knowledge they helped to give my doctors direction. Within 3 weeks I was able to go home with my native heart and 11 years later I am living a normal life. The Myocarditis Foundation not only helped me in my time of desperate need but continues to support me. They arrange family support meetings where we can ask all our questions and meet other families going through the same struggles as we have been through. They continue to do extremely valuable research through grants and have been able to create a biobank which will escalate research possibilities. 11 years ago no-one had heard of myocarditis and today thanks to the foundations efforts at awareness most people have heard of it. They are always available and I can't thank the Myocarditis enough for saving my life.
Since my 14-year-old granddaughter Isabella died suddenly and totally unexpectedly from myocarditis in December 2021, the Myocarditis Foundation has helped me greatly in my grieving process. I have learned about myocarditis through their newsletters and read about the latest research into myocarditis. I've read about other people's experiences with myocarditis- either themselves or a loved one. I am so thankful that this foundation exists that I can donate to and feel I am contributing in a small way to the fight against this heartbreaking disease. I hope The Myocarditis Foundation will receive the recognition they deserve as a charity organization that has helped so many people touched by myocarditis and that also supports research necessary to conquering myocarditis.
When I was diagnosed with myocarditis, I had no idea what it was, how I got it, how it effected my health, nor did I know anyone with myocarditis. When I discovered the Myocarditis Foundation, I found the community and support I needed. Not only do they connect you with others that have been touched by this disease, they also offer meetings, on-line sessions with world renown cardiologists who specialize in the rare disease. I found answers and friends.
In 2019, I was diagnosed with Giant Cell Myocarditis, a rare virus that attacked and destroyed my heart. After my heart transplant, the Myocarditis Foundation has provided not only me, but my whole family with information and support. They helped us navigate through very unfamiliar and often frightening territory. We will always be grateful!