Candace Moose, President of the Board of Directors of The Myocarditis Foundation. Jamie Thomas-Ward, recovered Viral Myocarditis patient, Michele Coia-Veston, mother of young man who died from Giant Cell Myocarditis, attended Rare Disease Week on Capitol Hill this past week.
The annual event is sponsored by Rare Disease Legislative Advocates. The MF team visited their Congressmen to ask for support for rare disease legislation. This event is held every year and we look forward to having more people effected by myocarditis attend in the future.
The Myocarditis Foundation awards grants for one year research fellowships to study myocarditis with the aim of encouraging young PhD and MD scientists to pursue a career involving myocarditis. As well as financial support the Foundation also provides mentoring support with career advice and assistance with networking. Recently one of our grant recipients, Dr. Bettina Heidecker MD, was highlighted in an article in a prestigious scientific journal the European Heart Journal (reference Eur Heart J (2015) 36:398-403). In this article Bettina states that “Myocarditis is a disease affecting many young individuals. Currently we lack sufficient understanding of its pathophysiology to improve specific treatment.
Inflammation refers to immune cells and proteins released into the bloodstream by immune cells, like CRP and IL-6 which are used by clinicians as an indicator of inflammation. CRP and IL-6 are measured in the blood (i.e., sera). Myocarditis is defined by the presence of inflammation or immune cells in the heart muscle, called myocardium, by histology when a heart biopsy is obtained. Research in animal models has revealed that it is not just the presence of inflammation that causes a problem leading to heart failure, but it depends on the “type” of inflammation in the heart. There are many types of immune cells and some of them are good at fighting off infections like the viral infections that commonly cause myocarditis, and so are “protective”.
Myocarditis contributes to the global burden of cardiovascular disease primarily through sudden death and dilated cardiomyopathy, and the contribution of myocarditis as a cause of sudden death is most likely underestimated. For example, in Japan, the rate of myocarditis was estimated from an unselected national registry of 377,841 autopsies. 434 of these cases (0.11% or about 1:1000) had idiopathic, interstitial, viral, or non-specific myocarditis. In contrast, the rate of myocarditis was 3% (six of 200) in autopsies of sudden death patients in Japan. However, of 97 (77 male, 20 female) school children who experienced sudden death in Kanagawa prefecture, 3 of the 18 (16.6%) with histologically established cardiovascular disease had myocarditis.
Dr. Leslie Cooper attended the 11th Myocardial and Pericardial Disease Working Group, part of the European Society of Cardiology, this past week in Tel Aviv, Israel.
The Myocarditis Foundation was a Co-Sponsor of the meeting, Dr. Cooper gave a presentation, and the Foundation had a booth in the Exhibit Hall with information on Myocarditis for the attendees.
The meeting had over 250 physicians in attendance from all over the world and every person received a Myocarditis Foundation flier.
The Myocarditis Foundation logo was prominently displayed throughout areas where the meeting was held as well as behind the speakers during discussion sessions.
Rare Disease Week on Capitol Hill will take place in Washington, D.C.,from February 23-27. The five day event includes a rare disease documentary film screening , an art show , a legislative conference, the Women’s Democratic Club breakfast , Lobby Day at the U .S. Senate and House, a visit with the Rare Disease Congressional Caucus briefing, and Rare Disease Day at the National Institutes of Health. Candace Moose, President of the Board of Directors will be attending with patients and families who have been affected by the disease.
To learn more about Rare Disease week and to register to attend please visit NIH Rare Disease Day Website
The incidence of myocarditis in children is uncertain but it is estimated that 1 per 100,000 children per year are affected. It has been reported that 0.05% of all pediatric hospitalizations are for myocarditis. Understanding the incidence of myocarditis is problematic because the disease is difficult to diagnose.
The “gold standard” method of making a diagnosis of myocarditis requires a biopsy of the heart muscle. This procedure can be risky in infants and small children. Some institutions are now using cardiac MRI to make the diagnosis. The MRI is less invasive and carries a different risk profile for very sick patients, but we do not know how reliable it is at making the diagnosis in children.
The parents and siblings of Quinn Kirsch honored his memory again this year with an annual hockey tournament. 400 kids, many of them his friends, turned out in Edina, Minnesota, on Saturday, January 10th to play the game Quinn loved and to raise money for The Myocarditis Foundation. Quinn died unexpectedly in January 2013, shortly before his 9th birthday of myocarditis, leaving his family devastated. The diagnosis came weeks later. He had no symptoms.
Quinn was the youngest of four boys. He was fun, funny, loving and athletic. He had lots of friends and enjoyed doing just about anything with them.
The Myocarditis Foundation Board of Directors Meeting and Training was an exciting time as we are celebrating our Tenth Anniversary since IRS approval as a nonprofit. Candace Moose opened the meeting on Saturday, Jan. 10th, 2015, with a presentation on what was accomplished each year as well as a celebration of the award of the 14th Research Fellowship Grant and/or American Heart Association Research Fellowship Grant, with dollars raised by our generous donors, totaling close to $500K dollars, bringing us closer to a cure.
Dr. Cooper followed with a Ten Year Retrospective of Myocarditis Research. Dr. Jack Price, Pediatric Cardiologist at Texas Children’s Heart Center, then presented on the Statistics, Research, Diagnosis and Treatment of Myocarditis Children.
The Myocarditis Foundation is pleased to announce that it will be funding a research fellowship grant for the 2015/16 grant cycle. The Myocarditis Foundation will be funding a research grant awarded to Dr. Michael Bode of the University of North Carolina in the amount of $35,000. Dr. Bode is under the mentorship of Dr. Nigel Mackman of the University of North Carolina.
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.