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.
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.
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: 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.
Credentials: I am a Certified and Licensed Athletic Trainer with the Colorado Rapids of Major League Soccer. On Jan. 28, 2013, I lost my soon to be 3 year old daughter, Elysa, to Viral Myocarditis.
The loss has affected me in many ways, but mainly, I have been upset that the doctors in the ICU were not even on the right track with her illness. I believe that much more education and research needs to be done in order to help detect this awful disease and be able to treat it so that, hopefully, other families will not have to deal with such loss.
Credentials: Dr. Price is a pediatric cardiologist at Texas Children’s Hospital in Houston, TX. He is an expert in pediatric heart failure and critical heart disease and has authored or co-authored over 50 publications on pediatric cardiology. Most of his clinical time is spent treating heart disease in newborns, infants and children in the cardiac intensive care unit and cardiomyopathy clinic. His academicrank is associate professor of pediatrics at Baylor College of Medicine.
Why did you choose to join the board of the Myocarditis Foundation?
I chose to serve on the board because I have a passion for treating children with heart failure, including myocarditis. I hope to improve awareness of this disease, not just among the public but also among my peers and colleagues.
Credentials: Founder and Chairman of the Board of National Sporting Goods Corporation (1963 to present). Manufacturers and Importers of Roller Skates, inline Skates and Skate Boards (Chicago Skate Company) as well as Private Label Toys. Offices located in Fairfield, NJ. Graduate of University of Pittsburgh (1958 BBA) Married to Diane Aranson.
Our Son, Jeffrey Grossman, a Philadelphia Lawyer, passed away May 2013. (Giant Cell Myocarditis). I am honored to be a Board Member of the Myocarditis Foundation. May 2013, tragedy hit our family. Our Son, 46 years old, was taken from us due to Giant Cell Myocarditis. I realize the CRITICAL importance of “Raising Awareness” to the General Public, as well as Medical Professionals.
Credentials: Father of myocarditis victim.
After our son passed away from Myocarditis in 2010 we turned to the Foundation for some insight and answers. We found that we were not alone in this and when I was asked to be on the board I was hesitant at first. I am just your average person, but I do have a passion for seeing this disease conquered in my lifetime. I hope to give the rest of the board some insight as to what families that have lost a child are going through. I hope some of my ideas can help spread awareness and help others to cope with their losses. I am proud to be part of a group of individuals that all have one common goal, and that is to help others that have been affected by 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.