Dedicated to Saving More Lives Through Myocarditis Education and Scientific Advancement
About the Myocarditis Foundation
The Myocarditis Foundation is a private,
501 (c) 3 non-profit organization, established in 2005.
The organization is dedicated to providing accurate and up-to-date information to medical professionals, patients and their families, and to the scientific advancement of both the diagnosis and treatment of the disease with the goal of saving more lives.
In order to accomplish these goals, the Myocarditis Foundation:
- Sponsors conferences and lectures directed to both the public and to physician groups that deal with myocarditis, its causes, symptoms, diagnosis and treatment.
- Serves as a clearinghouse of information about myocarditis, by developing educational materials, pamphlets, and publications for use by the public, families and physicians.
- Maintains a website devoted to educating the public about myocarditis. Information on the site will be relevant to families and professionals alike and will provide a link to other relevant websites with additional information.
- Provides research grants to organizations or to individuals to conduct research into myocarditis, in an effort to further scientific knowledge of the disease.
- Maintains a listing and MF contact on The National Organization for Rare Diseases database (sponsored by NORD). The National Organization for Rare Disorders database requires that for a disease to be listed, it must affect fewer than 200,000 people in the United States. NORD serves as the primary non-governmental clearinghouse for information on rare disorders.
Leslie T. Cooper, MD
Credentials: Dr. Cooper is a founder of the Myocarditis Foundation, and has had a career-long focus on myocarditis, particularly giant cell myocarditis. He has published over 50 papers on myocarditis and edited the textbook Myocarditis, From Bench to Bedside. His research focuses on multicenter clinical and translational studies of myocarditis and its major consequence, dilated cardiomyopathy. He serves as a consultant in Cardiovascular Diseases and is the Director of the Gonda Vascular Center at Mayo Clinic in Rochester, MN. He holds the rank of Professor of Medicine at the Mayo Clinic College of Medicine. To view his Mayo Clinic webpage, click here.
I serve on the board because there is no better way to help patients and their families who are impacted by myocarditis. Every time I hear from a grateful family and I know that the information and support that we provide is unique, I am reassured that the time and effort spent on the Myocarditis Foundation activities is worthwhile.
Credentials: Candace Moose is a giant cell myocarditis survivor and heart transplant recipient. She is a retired nurse and a wife, mother, and grandmother. She also is a speaker and advocate for organ donation and is the author of the book The Grateful Heart: Diary of a Heart Transplant
I serve on the Board of Directors of the Myocarditis Foundation because I want to put an end to the suffering this disease wreaks on patients and families. I am passionate, driven, and fully committed both programmatically and financially to try to make a difference. This disease caused so much suffering in my family and in every family that contacts us from all over the world. I pray that the work we do will someday result in greater awareness of the disease, faster diagnostics and better treatments leading to more lives saved and decreased suffering.
James Moose, MBA
Credentials: James Moose is a retired healthcare executive with experience in pharmaceuticals, diagnostics, and medical devices. He has held various management positions at Johnson and Johnson and other major companies. Mr. Moose is currently retired and provides consulting services in addition to his work for the Myocarditis Foundation. He is the husband of a giant cell myocarditis survivor.
Having retired after a 37-year career in the healthcare industry, I want to spend some of my time, effort, and resources to help charitable causes that I believe in. Given my wife Candace’s personal experience with myocarditis, we know that this disease strikes suddenly and without warning, affects people of all ages, affects otherwise healthy individuals including young athletes, is relatively unknown by the general public, and its research is under-funded. I believe that this is a charitable cause where I can have a positive impact.
Clement Weinberger, PhD
Credentials: Dr Weinberger received a PhD in cell biology from New York University. He did post-doctoral research in developmental physiology at Hubrecht Laboratorium in Utrecht, Netherlands and in the biology of pediatric neurectodermal tumors at Memorial Hospital Sloan-Kettering Cancer Center in New York. Earlier in his professional career he taught at both the secondary school and University levels. He recently retired as Director of Medical Communications in the Medical Affairs Department of a major international pharmaceutical company (Sanofi Pasteur) and is now an independent medical communications consultant. He spends his time writing in New Jersey, USA and in South Bohemia, Czech Republic.
I decided to serve on the Board of Directors of the Myocarditis Foundation because I believe I can help to increase awareness and sensitivity to this serious, under diagnosed condition.
Credentials: Joseph Rumore is the former Managing Director of Agency Captives Companies for the Atlantic Mutual Insurance Companies. Joseph is a heart transplant recipient due to myocarditis.
I am a heart transplant recipient. The transplant was needed as a result of Myocarditis. It is my desire to create a better understanding and awareness of this disease, which can lead to treatment and avoid the last option of transplant.
Lori Blauwet, MD, FACC, FASE
Credentials: Dr. Blauwet is a Cardiovascular Diseases Senior Associate Consultant at the Mayo Clinic in Rochester, MN. Her clinical and research focus is on heart disease in women, particularly women with myocarditis and peripartum cardiomyopathy. She holds the rank of Assistant Professor of Medicine at the Mayo Clinic College of Medicine.”
Myocarditis is a relatively rare disease that primarily affects children and young adults with sometimes devastating results. The Myocarditis Foundation is an excellent organization whose aim is to promote educational and outreach efforts to the general public as well as to medical professionals, patients and their family members and friends. The Foundation also actively sponsors myocarditis research in order to advance the science and ultimately to provide better care for patients with this disease. I am very proud of the work that this Foundation has accomplished thus far and look forward to continuing to assist in developing and implementing our educational, outreach, and research programs.
DeLisa Fairweather, PhD, FAHA
Credentials: Dr. Fairweather is an Assistant Professor and myocarditis researcher at Johns Hopkins University in the Department of Environmental Health Sciences in the Division of Molecular and Translational Toxicology.
I am excited to be a board member of the Myocarditis Foundation so that I can increase awareness of this important disease and facilitate networking to bring breakthroughs in understanding the causes and factors that drive disease progression. My interest in myocarditis began during my PhD studies in Australia. I was intrigued by the question of how infections could cause autoimmune disease, and in particular the autoimmune heart disease myocarditis. After finishing my PhD in Australia I continued this quest at Johns Hopkins University, eventually starting my own laboratory. My lab focuses on understanding how infections and toxins cause myocarditis, dilation and heart failure, and why men develop heart disease differently than women. Answers to these questions will help researchers and clinicians work out how to prevent disease and develop better treatments. As a young researcher I am enthusiastic to see breakthroughs in understanding myocarditis and to make more people aware of its impact on families.
Credentials: Michael Austry is the owner of a publishing representative firm in Dallas, TX and manages print advertising for various national magazines. Through his work relationships, he is hopeful some of the magazines will help in running public service announcements about Myocarditis in the magazines, as space is available. Michael is married to Danielle and has a one-year old daughter named Devin Mark, in memory of his beloved brother.
I was introduced to Myocarditis on March 14, 2010 when my youngest brother, Mark, collapsed and died after crossing the finish line with me at the White Rock Lake Rock and Roll Half Marathon in Dallas, Texas. Mark was 32 years old and the married father of two young daughters. Since learning that the cause of Mark’s death was due to Myocarditis, I have been an avid supporter of and fundraiser for the Myocarditis Foundation.
Monte Willis, MD, PhD, FASCP, FCAP
Credentials: Monte S. Willis is an Associate Professor of Pathology and Laboratory Medicine in the McAllister Heart Institute at the University of North Carolina at Chapel Hill. He has a long-standing interest in understanding the underlying mechanisms of cardiac diseases as a biomedical researcher in order to develop novel therapies to be used clinically. He has authored 140 peer-reviewed manuscripts, including two books in the Translational Medicine series on Translational Cardiology and Translational Vascular Medicine currently in press (Springer Science + Business Media), and serves on the editorial board of twelve journals.
As both a clinical pathologist and a biomedical researcher in heart disease, I am acutely aware of the seriousness of myocarditis and the limited arsenal we have in fighting the disease. I joined the board of directors to facilitate the integration of academics and biotechnology in developing therapies for myocarditis and other inflammatory heart diseases.
Credentials: Lou Romano is the owner of HomeWell Senior Care, a home health care agency focused on assisted senior citizens with their activities of daily living. Since 2005, HomeWell has become a community leader in home health care initiatives and currently provides over 7,000 hours of weekly service throughout Bergen County, New Jersey.
In 2011, I attended the Myocarditis Foundation Golf Outing and the poster board stories (Not a Blank Canvas) truly affected me. I remember getting emotional when reading about the struggles, deaths, and success stories of those with Myocarditis. When Joe Rumore asked me to serve on the board of directors, I immediately jumped at the opportunity. Not only because he is a dear friend, but because I know I can help the Foundation make an impact in the fight against Myocarditis.
Medical Advisory Board
Akira Matsumori, MD – Professor of Medicine, Department of Cardiovascular Medicine, Kyoto University Graduate School of Medicine, Kyoto, Japan.
Bruce M. McManus, PhD, MD, FRSC, FCAHS – Professor & Director, The James Hogg iCAPTURE Centre, University of British Columbia-St. Paul’s Hospital Scientific Director, The Heart Centre Providence Health Care, Vancouver, British Columbia, Canada.
Dennis M. McNamara, MD – Associate Professor of Medicine; Director, Heart Failure Section; Director, Cardiomyopathy Clinic and Heart Failure Research Program, Cardiovascular Institute at University of Pittsburgh Medical Center Presbyterian, Pittsburgh, PA.
Steven D. Colan, MD – Professor of Pediatrics at Harvard Medical School and Associate Chief of Cardiology at Boston Children’s Hospital.