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Myocarditis Foundation

3 weeks ago

Ryan died from acute myocarditis 1 year ago.

"This past year has been like no other. Andy and I last spoke with Ryan on Ironman Sunday in Lake Placid on July 24, 2016. We were volunteering and training for our upcoming IMMT. He died in his sleep that night from acute myocarditis. We carried his ashes at IMMT and Team Ironman had an extra medal for us at the finish, for Ryan. As a Family Physician, it's been very difficult to review his chart, read his history, see his work up and see how his heart infection diagnosis was missed. Would all of my colleagues in medicine please remember: people under the age of 40 who present with acute infectious illness with chest pain, especially if worse with laying down, may have acute heart infection and deserve a full work up, including serial ekgs, serial troponin, overnight telemetry observation, and an echocardiogram, not a 3 hour chest pain protocol. If you don't think of the diagnosis, you will miss it. And your patient may die.
Andy, Shaun and our family thank all our friends, fellow athletes, Coach Doug and QT2 and our work colleagues for all your support this year. We thank Team Ironman for your support again this weekend and especially for spreading the word about myocarditis. May our story and this video save another life. And for those of you in medicine, please share this video, this message and help save a life. This one is for Ryan." -Lynn Cunningham, MD (Ryan's mother) ... See MoreSee Less

Lynn's strength during what could be deemed one of the most difficult times in a mother's life is th...

IRONMAN Lake Placid

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Myocarditis Foundation

1 month ago

A 52 year old prosecutor and avid runner was stopped short by a cold that she couldn't shake.

After months and many doctors appointments she was diagnosed with viral myocarditis which lead to dilated cardiomyopathy and ultimately a heart transplant.

She has now returned to work and finds time to go running and to travel after her heart transplant just a year ago.

Read her full story by clicking the link below: ... See MoreSee Less

In a matter of weeks, Yasmin Mullings went from life in the fast lane to a spot on the heart transpl...

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Myocarditis Foundation

2 months ago

The Myocarditis Foundation’s 5th Annual Family Meeting was held on Friday June 23rd at the Empire Hotel in NYC. Fifty-five family members were in attendance. We started the meeting with a moment of silence for a prayer for all those that have been affected, and those that are still battling with the disease.

We had the honor of having 7 Giant Cell Myocarditis Survivors in a room together, ranging in time frames of a few months to 17 years from when they were diagnosed.

The meeting started with an icebreaker so that everyone could get to know those that they did not know before. We had a number of new families present so this really helped to get everyone more comfortable with each other.

The current MF Fellowship Grant Recipient, Dr. Guobao Chen PhD, from Johns Hopkins University, spoke on his research that is being done. He is working on preventing those affected by Myocarditis from going on to developing Dilated Cardiomyopathy and Heart Failure. He reported that in Myocarditis induced Dilated Cardiomyopathy in children, 60% go on to needing a heart transplant. This is extremely important work that he is conducting and we wish him much success in his research.

The President of the Foundation gave an overview of the direction of the MF, and the starting of Regional Chapters in the near future. A family member of one of these chapters will have a seat on the Board of Directors so that input can be shared more closely back and forth between them.

We had a panel discussion where the attendees could ask the doctors and researchers their questions. We also had smaller discussion groups where the attendees shared their stories throughout the day at the extended lunch period and during the “round table” discussions. Our guest speaker, Dr. Doug Luffborough PhD, shared the story about his childhood and how he was motivated to make something positive from the negativity in his early life.

Dr. Cooper and Dr. Fairweather shared the importance of us starting a Bio-Bank. This is where banked blood and tissue samples from myocarditis patients from all over the world will be housed in one location. Collaborative researchers can access those samples and share their research with each other. We believe that this will lead to a faster realization of a cure. The accessibility of obtaining larger research grants, which are restricted to those that have international collaborative relationships, which we will now have, will become a reality.

Many positive comments were made in the evaluation forms that were completed and submitted at the end of the day.

The Meeting culminated with a lovely dinner in a private dining room at Bar Boulud Restaurant where we were able to share more about ourselves with our new friends within the myocarditis family. It truly sounded like a large family gathering where there was a lot of interaction and laughter amongst people who were reconnecting after a period of time away from each other.

Contact information was given and will be shared amongst the attendees so that the friendships and support of each other can continue throughout the year. The tentative date for the Gala in 2018 is June 21, 2018, and the tentative date for the Family Meeting will be June 22, 2018. These dates are only tentative right now. The Gala will tentatively be at the Mandarin again, but we will be looking for alternative housing and venue site for the Family Meeting. ... See MoreSee Less

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Myocarditis Foundation

2 months ago

Another story about how myocarditis took the life of a young boy and how his story touched the life of a local judge in Minnesota.

One day we hope that there will be less of these stories to share with you about children lost to myocarditis. ... See MoreSee Less

We are all one family: Poignancy in the story of a boy, his mother and a judge

startribune.com

A boy's story is a reminder of the frailty of life and the preciousness of our children.

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Myocarditis Foundation

2 months ago

Research on myocarditis is occurring all over the world to try to find diagnostics and treatments for this devastating disease.

A recent BBC story reported that proteins from tick saliva have been found to block myocarditis from going to dilated cardiomyopathy.

Prof Shoumo Bhattacharya, BHF professor of cardiovascular medicine at the University of Oxford and his group have "identified new proteins in tick saliva that appear to block the effect of particular chemokines that cause heart problems." ... See MoreSee Less

Tick saliva 'gold mine' blocks killer heart condition - BBC News

bbc.com

Oxford scientists are excited by the prospect of making a drug from a bug.

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