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.
Written by: Hamish Deery
October 11, 2014: Kona, Hawaii
The alarm went off at 4:15 am but I was already awake. The rest of the family was bleary eyed but also up and ready for the long day head. We ambled the 2km from our rental condo town to transition. The tension was palpable race morning as the 2,200 athletes were body-marked with race numbers and made final arrangements in transition with their bikes, pumping tires and filling drink bottles. I felt pretty calm, the overwhelming feelings were anticipation mixed with some apprehension and nerves.
They ushered the male age groupers into the water about 6:40 am, and as we dreaded water at the start line waiting for the cannon to go at 6:50 am.
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 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.
January 5th, 2015
Dear Myocarditis Foundation Friends & Families,
I am writing to tell you that I have resigned as Director of the Myocarditis Foundation. Following the birth of my daughter Cora, I realized that I would no longer be able to give 100% of my time and energy to the Myocarditis Foundation. It became clear that the fair thing to do was to step down and make way for a new Director. This was an extremely difficult decision to make, but after talking with many of you, I know I have made the best decision for my family. It is my work at the Myocarditis Foundation and particularly the work with many of the families affected by this disease that has taught me that time with family is a precious gift and that we should not take it for granted.
Candace Moose, Giant Cell Myocarditis survivor due to a heart transplant and co-founder of the Myocarditis Foundation, wrote a beautiful and eloquent book tracking her experience of her heart transplant. Candace’s book, The Grateful Heart highlights the ups and downs of the journey of heart transplantation as well as how she addressed the big questions that come with a rare disease that leads from a near-death experience to the transplantation of a new heart. It is a beautiful read, one that can speak to anyone about the power of positive thought, close friends and family, and an amazing staff of medical professionals.
Candace Moose, Co-Founder and President of the Board of the Myocarditis Foundation, was interviewed by the Rare Disease Report about the origins of the Myocarditis Foundation and what the Foundation’s current focus.
The link below contains the video interview with Rare Disease Report interview with Candace Moose
Rare Disease Report: Myocarditis Foundation Origins and Current Focus