Latest "Myocarditis News" Posts

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.

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.

The Myocarditis Foundation 5th Annual Patient, Family and Researcher Meeting

5th Annual Family Support Meeting: June 23, 2017 and optional second day on June 24, 2017

The 5th Annual Family Support Meeting will be at the Empire Hotel in NYC on June 23, 2017. This will be a one-day event, with an optional fun event on the 2nd day if you would like to attend.

The Empire Hotel is located at 44 West 63rd Street New York, New York 10023. Hotel phone number: (212)265-7400.

Depending on your airline is dependent on what airport you will probably be flying to. You can fly into any of the 3 airports in the New York/New Jersey area, and here are some pointers:

  • LaGuardia Airport (NY) is the closest to the city and the least costly to get to the city from via Uber or Taxi.

Posted by Myocarditis Foundation in Myocarditis News.

Candace Moose representing the Myocarditis Foundation at Rare Disease Day in New Jersey

On Monday February 29 th, Candace Moose, Co-Founder of the Myocarditis Foundation, attended New Jersey Rare Disease Day. Rare Disease Week is a global event sponsored in the US by the National Organization for Rare Diseases. It is designed to bring awareness of the unique needs of victims of rare diseases and to advocate for legislation affecting of our diseases. Candace met with Senator Ronald Riser who serves on the Health and Human Services Committee, in his NJ State Capitol office in Trenton, to make him aware of myocarditis, the Myocarditis Foundation, and how this disease can impact the lives of NJ residents.

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

International Cardiology Conference on Myocarditis, Japan, December 2016

The year 2016 may have just begun, but Dr. Leslie Cooper is already scheduled to speak at many various conferences around the world on Myocarditis. This one in particular, “The International Society of Cardiomyopathies and Heart Failure” (ISCHF) will be in Kyoto, Japan, December 2-4, 2016. The theme of the ISCHF 2016 is Prevention, Diagnosis, and Treatment.

The ISCHF, established in 2007, has held regional and international congresses, and established working groups and task-forces to facilitate much-needed cooperative research in these fields among their members worldwide and with other societies and related groups in the fields of cardiomyopathies and heart failure.

Posted by Myocarditis Foundation in Myocarditis News, Research News.

Eligibility and Disqualification Recommendations for Competitive Athletes with Cardiovascular Abnormalitie

Eligibility and Disqualification Recommendations for Competitive Athletes with Cardiovascular Abnormalities

Dr. Leslie Cooper, who co-authored this paper, shared this with us for you to read.

In a paper published in an American Heart Association Journal, in 2015, there are general considerations to consider before resuming competitive sports. I will try and summarize the myocarditis section of it here, but for the complete article, please click here.

Myocarditis commonly presents with severe shortness of breath on exertion, chest pain and cardiac arrhythmias. It can also present as a myocardial infarction-like syndrome (Heart Attack), with sudden death in the presence of normal coronary arteries.

Posted by Myocarditis Foundation in Myocarditis News, Research News.

The Myocarditis Foundation Announces its 2015 Grant Recipient for the 2016/2017 Grant Cycle

The Myocarditis Foundation is pleased to announce that it will be funding a research fellowship grant for the 2016/2017 grant cycle. The Myocarditis Foundation will be awarding the research grant to Dr. Jon Sin of Cedars-Sinai Medical Center in the amount of $40,000. Dr. Sin is under the mentorship of Dr. Ralph Feuer of Cedars-Sinai Medical Center.

Jon Sin

The Myocarditis Foundation, an international non-profit organization founded in 2005, is dedicated to increasing awareness and hastening progress in understanding this rare disease. Myocarditis is a disease that is marked by inflammation and scarring of the heart muscle, which can progress rapidly to heart failure and death or heart transplantation.

Posted by Myocarditis Foundation in Awareness & Fundraising, Myocarditis News, Past Grant Recipients, Press Releases, Research News.

Newest Myocarditis Foundation Board Member, Christopher Corso

The Myocarditis Foundation would like to introduce and welcome Christopher Corso to you as our latest member of the Myocarditis Foundation Board of Directors!

Chris has a 12 year old son who contracted Viral Myocarditis in May 2015. While his son is much improved, he continues his battle against it today. Chris found out about the Foundation through an internet search on myocarditis and has been very involved with us ever since.

Chris is an executive in the insurance/reinsurance industry, currently employed at XL Catlin. He is working on creating an annual event to raise awareness and generate funds for research to put an end to myocarditis as we know it today.

Posted by Myocarditis Foundation in Myocarditis News.

Offering Hope and Support for Children with Heart Failure

Opening of Nation’s First Pediatric Heart Failure Intensive Care Unit (HF ICU)

As one of the largest programs in the nation, Texas Children’s Hospital, (TCH) in Houston, is leading the way for positive outcomes in pediatric patients with Heart Failure.

Each year, their dedicated team cares for more than 650 cardiomyopathy and heart failure patients. Myocarditis is a major cause of cardiomyopathy, and the mortality rate in children with Myocarditis is 4.2% in children in the US.

Myocarditis is the 2nd leading cause (25%) of acute heart failure in children, with the 1st leading cause being Idiopathic (unknown cause) Dilated Cardiomyopathy; which in effect, could be caused by Myocarditis, thus increasing the percentage caused by Myocarditis.

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