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.
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.
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.
The Myocarditis Foundation is announcing the launch of their Tribute Cards! Tribute Cards are given for any reason that one might purchase a greeting card; however, it includes the acknowledgement of a donation made to the Myocarditis Foundation. Tribute Cards can be given for any reason including Memorial Cards, Birthdays, Anniversaries, Graduations, Thank You, Mother’s Day, Father’s Day, or any other Holiday or Occasion.
Please consider sending a Myocarditis Tribute Card for your next significant holiday or occasion. Minimum Donations begin at $5.00 and are tax deductible. Please follow these simple steps to send a Tribute Card:
1. Please call or email Diane Aranson at 561-213-2775 or DiJoPolo@aol.com with:
• Your name
• Your address
• Person and/or occasion you will be honoring
• Donation amount
The Myocarditis Foundation is honored to announce a new partnership with the senior care company, CareOne. CareOne gave the Myocarditis Foundation a generous donation and became a sponsor of this year’s Myocarditis Foundation’s Annual Golf Tournament. It is because of CareOne’s generous donation and sponsorship that this year’s golf tournament is looking to be one of the most profitable in the Myocarditis Foundation’s history, allowing for the Myocarditis Foundation to continue in its mission of saving lives from the heart disease myocarditis.
With services that include post-hospital care, rehabilitation, assisted living, long- term care and a variety of clinical specialty programs, CareOne offers compassionate care in gracious, professionally managed centers and communities.
The Myocarditis Foundation actively supports international outreach to help educate physicians and the public about this deadly disease. In 2014 Dr. Cooper spoke or will speak on myocarditis at the Asia Pacific Heart Failure Society in Indonesia, the Indonesian Cardiovascular Society, the Samsung Medical Center in Seoul South Korea, the World Heart Federation Meeting in Melbourne Australia, and the European Society of Cardiology’s Myocardial and Pericardial Working Group meeting at the Dead Sea Israel. Dr. DeLisa Fairweather spoke on myocarditis at a scientific meeting in Berlin Germany. She also performed collaborative research in Seoul South Korea, Berlin Germany, and Marburg Germany.