We are excited to announce that the 3rd Annual Patient, Family and Researcher Meeting will be held September 25 & 26th, 2015 in National Harbor, MD near Washington, DC. Please see information about the meeting below, we look forward to seeing each and every one of you.
Michele Cola-Veston, mother of Nino a 21 year old boy who passed away from giant cell myocarditis, was interviewed by the Rare Disease Report about her families story of their battle with myocardits.
The link below contains the Rare Disease Report video interview with Michele Cola-Veston:
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
On May 21, 2014 we lost our beautiful, healthy, and active 19-year-old son Tyler to viral myocarditis. Tyler was bright and funny and was just getting his life started. Ty loved all kinds of music and was an avid bass guitar player. He enjoyed sketching manga-style cartoons and writing poetry. Tyler’s favorite rock groups were The Doors and Stone Temple Pilots. He was captivated by the TV series “Breaking Bad”, and loved to discuss the show with his many friends. At his funeral, all of his friends that spoke claimed Tyler was their best friend.
On that day, Tyler had just driven home from his girlfriend’s house to shower and get ready for work.
Many children who develop acute viral myocarditis present to their care team in shock or in impending shock. They frequently have poor circulation, weak or “thready” pulses, and irregular heart rhythms. Their other organs such as the kidney, liver and lungs may also be weakened or injured. These patients are at greatest risk of cardiovascular collapse and death.
Fortunately, mechanical circulatory support (MCS) devices may allow doctors and surgeons to save the lives of children with advanced heart failure caused by myocarditis. A MCS device is a type of artificial heart pump that is inserted into the patients’ blood vessels and/or directly into the heart.
The Myocarditis Foundation is pleased to announce that they have named their 2015 research grant in memory of a little boy from Minnesota who died two years ago of myocarditis. The Quinn M. Kirsch Memorial Grant was awarded to Dr. Michael Bode of UNC/Chapel Hill, North Carolina who is conducting research under the mentorship of Dr. Nigel Mackman.
To raise the $35,000 to cover the cost of the grant, Quinn’s parents, siblings, friends and school held several fundraisers but the primary event was Quinn’s Cup to celebrate the life of this warm and much-loved child who collapsed suddenly in his home after an ordinary day of activities, and died later that day at the hospital.
Tufts University’s 180 Degrees Consulting to design marketing program for the Myocarditis Foundation
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”.