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Medscape Rare Disease Crusader: Leslie Cooper, MD

From 1905 to 1993 there were only 90 reported cases of giant cell myocarditis, the cardiac condition Cooper specializes in treating. Today, there are 20 known patients in the world.⠀

Cooper, the chair of cardiovascular disease at the Mayo Clinic in Jacksonville, Fl., says he became interested in treating giant cell myocarditis because of a patient he treated early in his career.

“She was admitted to the ICU and died of giant cell myocarditis which at the time was always fatal. She was a young, healthy vibrant 28-year-old and there was nothing I could do to save her. It bothered me a lot,” he says.⠀

Thanks to Cooper’s work and the work of others, an immunotherapy treatment was developed that translates into a 50% one year survival rate.

Posted by Myocarditis Foundation in Myocarditis News.

Myocarditis Awareness Need…

Why is it that every time an otherwise healthy young adult dies of a heart problem the public try and link it to drugs or alcohol?

George Michael’s family is one such family…think of how much hurt and sorrow were added to their unimaginable loss of a child and or loved one when George Michael was found dead in his bed on Christmas morning.

After months of speculation and hushed talk, we find out that the coroner concluded that he died of Cardiomyopathy, Myocarditis, and a Fatty Liver. “Natural Causes they say…”

Cardiomyopathy and Myocarditis are NOT “Natural Causes of Death” …

Myocarditis is a medical condition that many people have never heard of until it strikes them or someone that they know…then it can be devastating.

Posted by Myocarditis Foundation in Awareness & Fundraising, Myocarditis News.

1st Annual Myocarditis Foundation Gala Recap & Video

The 1st Annual Myocarditis Foundation Gala was held on Monday June 20th at the Mandarin Oriental in New York City.

The event was held in honor of Matthew Corso, a 13-year-old myocarditis survivor who was honored with a standing ovation when introduced by his father, Christopher Corso, the Chairman of the event and Myocarditis Foundation Board member.


The event was a huge success with over 300 in attendance. The Gala consisted of dinner, cocktails, mingling, both a silent and live auction to raise funds for the mission of the Myocarditis Foundation (Research, Education/Awareness, and Family Support.)

Just like the Myocarditis Foundation reaches out worldwide to help those looking for answers, so were we blessed to have people from all over the globe in attendance to share the evening with us.

Posted by Myocarditis Foundation in Awareness & Fundraising.

Myocarditis, Cardiomyopathies and Sudden Death in Children Symposium

Texas Children’s Hospital and the Myocarditis Foundation Symposium

for Community Healthcare Professionals on:

Myocarditis, Cardiomyopathies and Sudden Death in Children (March 25, 2017 8am to 4pm)

Dr. Jeffrey Towbin, Keynote Speaker

Jeffrey A. Towbin, M.D., is Co-Director of the Heart Institute at Le Bonheur Children’s Hospital, Chief of Cardiology at St. Jude’s Children’s Research Hospital, and Professor and Chief of Pediatric Cardiology at the University of Tennessee Health Sciences Center.  From 2003 to 2009 he served as Chief of Cardiology at Texas Children’s Hospital.

Dr. Towbin’s research has focused on the genetics and molecular biology of cardiomyopathy and advanced heart failure.  

Posted by Myocarditis Foundation in Awareness & Fundraising.

2016 MF Fellowship Research Grant Recipient-Dr. Guobao Chen

The Myocarditis Foundation is pleased to announce that Dr. Guobao Chen, PhD, is the 2016 Fellowship Grant Recipient for the 2107-2018 Academic Year. Dr. Chen was the second place finalist in last year’s Fellowship Grant applicants, but came in above all the others in the 2016 submissions.

Dr. Chen is from Johns Hopkins University School of Medicine and his mentor is Dr. Daniela Cihakova MD, PhD. Dr. Cihakova was the very first MF Fellowship Grant recipient in 2006. Dr. Chen is now conducting myocarditis research in Dr. Cihakova’s Lab and his research submission is entitled: “The Role of PDGFRa+ Cardiac Fibroblast in Myocarditis.”


Posted by Myocarditis Foundation in Research News.

Elvis returns to Spring City, Tennessee, to help support the Myocarditis Foundation

Patty Edgeman, mother of a Viral Myocarditis victim Clayton Edgeman, wanted to do something to raise awareness for the disease that took her son on May 17, 2016 without warning.

Clayton, was a hard worker who never missed a day of work in his life until this day when he did not arrive at work as scheduled. His mom and co-workers new that something was wrong and went looking for him. They found him unresponsive in his apartment and after three months learned that it was viral myocarditis that took his young life leaving behind a 4 year-old son.

Patty reached out to our website and contacted us for more answers.

Posted by Myocarditis Foundation in Awareness & Fundraising.

“A Night to Remember” Fundraiser in Kewaunee, WI

Hello to all our followers…

There are many times when people ask if there are any events coming up in “my neck of the woods”…

This event, is held every other year by one of our Myocarditis Foundation Board Members in memory of his son Brad, who died in 2010 after being misdiagnosed as “the flu”.

Randy has been a constant advocate for the Myocarditis Foundation and supporter in raising awareness for Myocarditis, so that others get the proper diagnosis and don’t suffer the devastation that his family has.

His event brings out many supporters from Kewaunee, Wisconsin and mixes fun with the awareness and fundraising…

If you will be in the area or can easily get their, we encourage you to join them in “A Night to Remember Brad Vanness”.

Posted by Myocarditis Foundation in Awareness & Fundraising.

Myocarditis Foundation Received St. Jude Medical Foundation Grant

The Myocarditis Foundation is excited to announce that we have received a grant from the St. Jude Medical Foundation to help fund the Revision of the Myocarditis Foundation Website.

In this rapidly changing technological world, the grant will be used to redesign our website and expand our social media reach to meet the Educational and Awareness needs of our viewership.

Please look for the changes that will occur within the upcoming months. The updated website will make its debut ‘in-total’, as we do not want to impact our readers availability to access the website while changes are occurring.

Posted by Myocarditis Foundation in Awareness & Fundraising, Myocarditis News.

Even if you missed Giving Tuesday…

Hello everyone…We know that your lives are often so busy that you do not know where the day has gone and before you know it it is time to go to bed to get rejuvenated for the new day…

While #GivingTuesday is past, donations are still graciously being accepted at the Myocarditis Foundation website by clicking the DONATE button which will take you to our PayPal page for your generous donations.

If you would rather mail us your donation, please do so to:

The Myocarditis Foundation

3518 Echo Mountain Drive

Kingwood, Texas 77345-2030

Every little bit helps us get closer to our goal of saving lives.

Posted by Myocarditis Foundation in Awareness & Fundraising.

Thank you for your gifts on Giving Tuesday

The Myocarditis Foundation would like to thank all of you who have made a donation to our cause on #GivingTuesday. The Myocarditis Foundation could not continue carrying out our Mission of Raising Awareness / Education about Myocarditis, Funding Research specific for Myocarditis, and Emotionally Supporting those who have been affected by Myocarditis without you.

40,000-50,000 people per month, from all over the world, reach out to our website for information on Myocarditis that they cannot obtain elsewhere. It is because of your generosity that we are able to continue our mission and our singular goal of Saving Lives.

Thank you all for all that you do to help our cause.

Posted by Myocarditis Foundation in Awareness & Fundraising.