Our 20 Year Journey

On March 5, 2005, the Myocarditis Foundation received their official IRS nonprofit approval letter. Dr. Cooper and I had been working on all the background materials for several years prior to making the application. I benefitted from Dr. Cooper’s knowledge about Giant Cell Myocarditis when my Critical Coronary Care Team from Columbia Medical Center in New York consulted Dr. Cooper regarding my case in September 2001.

I arrived at Columbia via ambulance in catastrophic heart failure and cardiogenic shock after being transferred between two other hospitals that did not know how to care for me. Dr. Cooper’s reputation in the field of cardiology was well known through his published research and speaking engagements. His specific area of interest was Giant Cell Myocarditis.

I was privileged to be met as a direct admit to CCU by Dr. Mario Deng, a relatively new member of the cardiology team who had experience with my rare diagnosis. The diagnosis of GCM was made quickly, the treatment recommended by Dr. Cooper was initiated and but by the grace of God, I survived until the transplant and beyond to this day 24 years later, so far.  I survived in large measure because Dr. Cooper’s research recommended a treatment protocol that allowed the inflammation in my heart to subside.  The treatment acted as a bridge to transplant. My gratitude for his intelligence, his gifts, his compassion, and his commitment to help patients with a diagnosis that was almost certain death.

I contacted him several weeks after I got home and said, “What can I do to thank you?” He said we needed to start a foundation, to be a resource for patients and families, to raise money for research and to educate the public about this disease. The Myocarditis Foundation was born.

To date over a million dollars has been raised and awarded to mentored scientists to study myocarditis. Our hope has always been that they would become life-long researchers.

Throughout the remainder of 2025, the Myocarditis Foundation will be celebrating this important milestone. In coming months, I will interview the founding members of Board of Directors, the Medical Advisory Board, prominent researchers, grant recipients, patients who survived and family members whose loved ones did not, each one sharing how the Myocarditis Foundation influenced their journey. Each story will be shared in our various forms of print media and website. Please join us as we reminisce and honor the medical professionals who further defined the science of myocarditis and Giant Cell Myocarditis over 20 years and the members of the Myocarditis Foundation staff who walked with us through our crises.

Dr. Leslie Cooper was already the established expert on Myocarditis and Giant Cell Myocarditis when I got sick in 2001. So, it was no surprise that the Center for Advanced Cardiac Care at Columbia Medical Center staff called him to consult on my case. He had heard this sad set of clinical parameters many times before as he was/is often called on for advice from major medical centers around the world on catastrophically ill patients with Giant Cell like me.

While a cardiology fellow at Stanford Medical Center in his twenties, Dr. Cooper, helplessly watched a patient die while on call one weekend, as there existed no established therapy to help this previously healthy young woman. After scouring all available published research and finding none, he decided to initiate clinical trials himself to learn more. And so, he began a lifetime commitment to a cycle of research, proven hypotheses, published articles in respected medical journals and speaking/teaching/training doctors all over the world.

One innovation he discovered that saved my life was proving through research that chemotherapy given at the diagnosis of profound heart failure, acting as an immunosuppressant, could stop or greatly reduce the inflammation which might allow the patient to live long enough to receive a heart transplant.  It was my only chance to live. The chemo reduced the inflammation as hoped but the heart that remained was so badly scarred that it could not pump without a class of medication called vasopressors to give me a blood pressure, so my name was placed on the transplant list.

Another innovation born out of Dr. Cooper’s research was his proven theory that should Giant Cell recur after transplant, that the immunosuppressive drugs given routinely to heart transplants to prevent rejection are the same medications that would treat a recurrence. Only 15 years prior to the date of my illness, Giant Cell Myocarditis patients were excluded from receiving heart transplants because of this known consequence of recurrence.

Dr. Cooper is a rock star, he is the rock star of myocarditis, but many others from across the US and other countries around the world, were studying myocarditis too. Some of those thought leaders became our Medical Advisory Board and or members of our Board of Directors. You will hear more of them in subsequent articles.

Our paths crossed when I became ill in 2001, in a miraculous way that I can only call a God wink. Dr. Cooper had an agenda for a patient advocacy group, the first of its kind, where all could come and find support, where more research could be funded to find answers more quickly, to save more lives, and to stimulate young physician researchers to make myocarditis their calling as well. He also had designed our logo, laid out our mission, our structure and our goals. I had time, confined to the house due to a low white cell count for what seemed like forever. I had some nonprofit skills but had a whole lot to learn and a background in nursing, so I knew the lingo. And I too had a burning desire to try to keep others from suffering as I had done, so we were a match made in heaven and the Myocarditis Foundation was born.

More than twenty years ago when Dr Cooper and I were preparing legal documents to start the Myocarditis Foundation, our original focus was on Giant Cell Myocarditis, Dr. Cooper’s area of expertise. Giant Cell Myocarditis was considered a more virulent myocarditis disease process with poorer outcomes, and fewer survivors. Yet the ones who survived needed the support of each other.

However, after the website was posted on the internet in early 2005, the majority of our calls were from devastated parents who had lost children to Viral Myocarditis. We knew we needed a strong leader in Pediatric Cardiology on our Board of Directors, and we picked Dr. Jack Price of Houston, Pediatric Medical Director from the Heart Center at Texas Children’s Hospital. Texas Children’s Heart Center is ranked as the best in the nation for pediatric cardiology and heart surgery by U.S. News and World Report again in 2024-25.

Jack has been with us for many years. At our Family Meetings, on our Webinars, authoring newsletter articles, at Fundraising Events, wherever he is needed, Jack provides the pediatric cardiology expertise on Viral Myocarditis and answers questions on related diseases, treatments and outcomes.

Jack is a mild-mannered, kind, compassionate, easily approachable, extremely knowledgeable physician who cares deeply about our patients and their questions and concerns.

In his practice, he sees mostly heart failure and transplant patients on the inpatient team but also cares for patients in general cardiology clinics. He is an advocate for children with heart disease and strives to provide patient and family-centered care that is current, evidence-based, and trustworthy.

I had the opportunity to visit him at his brand-new Pediatric Heart Failure hospital tower. As we strolled the halls, I was overcome with grief for the lives and futures for these tiny patients and their parents facing a terrible diagnosis similar to my own but without years of life and wisdom to accept how their lives would be impacted moving forward. I was in awe of Dr. Price’s obvious choice of profession to take on this burden.

As teaching faculty at the Baylor College of Medicine, in addition to patient care, Dr. Price regularly teaches students and trainees at affiliated hospitals. His research interests focus mainly on pediatric heart failure. He received the Outstanding Pediatric Cardiology Research Award from the American Heart Association. He has authored more than 100 scientific manuscripts, book chapters and review articles.

We are honored and humbled to have Dr. Jack Price on our Board of Directors for so many memorable years. We have been made better through his service. Thank you doesn’t seem like enough.

As I have stated before, Dr. Leslie Cooper, my co-founder, had a very clear vision of what the Myocarditis Foundation should be.

One important aspect of the foundation was to have a Medical Advisory Board made up of experts/thought leaders in the field of myocarditis who would keep us on track and with whose reputation would enhance our integrity as leaders in the field. Additionally, the Medical Advisory Board would be responsible for evaluating the Research Grant applications that were submitted annually.

Their job has always been to make recommendations to the Board of Directors which grants were worthy of funding. The research had to be from a qualified individual under the supervision of a mentor with research experience in myocarditis, with a novel approach that was achievable in the timeframe allowed, that if the proposal yielded positive results, it could lead to a body of knowledge that could advance our understanding of myocarditis, thereby improve diagnostic methods or finding new treatment avenues.

Our Research Grant program has been wildly successful in producing advancements in medicine and life-long myocarditis researchers resulting in changes in the practice of medicine leading to greater survivability. To date, we’ve given away 1.4 million dollars in research grant funding over the past 20 years. In our early years, the goal was to raise enough money through fundraising efforts to give at least one grant every year. We did!

Dr. Dennis McNamara, of the University of Pittsburgh Medical Center, has been with us since the beginning in 2005, knowledgeably, thoughtfully, intentionally, fairly and professionally guiding the selection of which grants we should fund. He has given generously of his time and expertise to help us make a difference.

Dennis M. McNamara, MD, MS, is a cardiologist and is certified in both cardiovascular disease and advanced heart failure and transplant cardiology by the American Board of Internal Medicine. He is the director of the Center for Heart Failure Research at UPMC and is a professor of medicine at the University of Pittsburgh School of Medicine. He received his medical degree from Harvard Medical School and completed his residency and cardiology fellowship at the Massachusetts General Hospital in Boston.

Dr. McNamara joined the UPMC Heart and Vascular Institute in 1994. His clinical interests include the management of myocarditis and other forms of cardiomyopathy, and he is known nationally and internationally for his expertise in the management of peripartum cardiomyopathy. Dr. McNamara has published more than 150 manuscripts and book chapters and is a member of the American Heart Association, the American College of Cardiology and the Heart Failure Society of America.

I know Dr. McNamara as a fellow myocarditis warrior; each of us working in our own way; one who has given his career to eradicating some aspect of this disease from the world. He’s given his life for this disease, his hospital, his patients, our clients, his community and his family. I am hoping that you can grasp how blessed we’ve been as a foundation to have this kind of talent, this gravitas, in guiding our efforts to change the course of history of this disease.

On November 22, 2015, Giustina’s life changed forever. She received a disturbing phone call in the early morning hours. Her son was struggling to breathe. Within minutes, Lee took his last breath. He had just turned 31 in September. The hopes and dreams she shared with her son, Lee Andrew Hirsch, for his future came to an end.

Giustina shared, “It was hard to comprehend. Lee was young and healthy. The only thing he did complain about in the days prior to his death was stomach problems, maybe the stomach flu. At the time of his death even the ER doctor was stunned, and an autopsy was immediately ordered. However, it was not until seven months later that I learned that his death was due to Myocarditis, something I had never heard mentioned before. What is it? And why did it happen to Lee?” Giustina struggled to understand the disease that stole her only child. So, she turned to The Myocarditis Foundation and found both support and information.

In memory of her son, Giustina turned her grief into action and advocacy, raising funds for the Myocarditis Foundation so we could continue to raise awareness of this rare disease and conduct research. She doesn’t want this to happen to anyone else.

For the last ten years, Giustina has overseen the Myocarditis Foundation’s Family Meetings which are held annually to bring patients, families who have lost loved ones or who are caregivers together with the leading experts in the field. Based on the premise that no one can understand this disease like those who have been adversely affected by it, the families share their experiences with each other, while the physicians and researchers offer the latest information gained.

Giustina, is deeply admired by MF leadership and our families for her tireless passion, while we are all aware that just skin- deep away from the surface is her paralyzing grief in the loss of her son.

God bless you, Giustina.

Mario C Deng, MD, was the Advanced Heart Failure physician who was waiting in the Critical Coronary Care Unit for me to arrive at Columbia Medical Center via Emergency Medical Transport on September 3, 2001. I was fragile, in and out of cardiogenic shock, intermittently conscious and desperately ill. The two hospitals who had previously admitted me did their best to keep me alive but had no idea what was wrong with me, just that I needed to be moved to a tertiary care facility where I had a better chance to survive.

Dr. Deng suspected immediately that I had Giant Cell Myocarditis (GCM). A subsequent biopsy proved it to be so. I was placed on the transplant list.  Dr. Cooper was consulted by his team regarding my treatment plan. As a patient, instead of fear in the eyes of the doctors caring for me, I saw confidence, compassion and openness. I surrendered to their care.

Dr. Deng had seen GCM while practicing at Muenster University in Germany before coming to Columbia. In fact, he wrote the seminal textbook on Transplant Cardiology utilized in Germany. Post-transplant, Dr. Deng continued to care for me until his move to UCLA to assume the role of the Director of their Transplant Cardiology program in 2011. He was a Founding member of the Board of Directors of the Myocarditis Foundation in 2005. He provided leadership while serving the board, helping form policies and procedures to set the MF on a path to success.

During his time at Columbia, Dr. Deng co-developed the AlloMap blood test to diagnose allograft rejection. This blood test revolutionized patient care by reducing the number of painful heart biopsies in some patients and eliminating them altogether for others, which also reduced healthcare costs significantly.

Continuing his bench research in Los Angeles, Dr. Deng’s lab developed the molecular heart failure survival prediction blood test MyLeukoMap.

In 2011, Dr. Deng co-founded The Relational Medicine Foundation, alongside his wife, Professor Federica Raia (UCLA School of Education & Information Studies). At UCLA, they conduct research on the relationship between patients and healthcare providers, published in their books “Relational Medicine” and “Uncertainty”.

He is most well-known by patients for his accessible, genuine, and caring bedside manner. While physically absent from Columbia University for 15 years, his virtual presence is still deeply felt.

 

In an extraordinary career spanning more than four decades, Dr. Bruce M. McManus has made world-class contributions to the field of heart and lung research and care. A visionary and respected leader in the arena of organ failure and transplantation— particularly heart inflammation and infection (myocarditis) and transplant vascular disease— Dr. McManus’s longstanding work has had the potential to dramatically alter the treatment and care of patients with vital organ failure and for heart, kidney and liver transplants, thereby improving the lives of countless many.

In 1993, Dr. McManus joined the Faculty of Medicine at the University of British Columbia as the Department Head of Pathology and Laboratory Medicine, bringing with him 11 years as a clinician-scientist at the University of Nebraska Medical Centre, as a John F. Fogarty Senior International Fellow at the Max Planck Institute for Biochemistry in Martinsried, Germany, and previously as a resident and fellow in medicine and pathology at Harvard University/Peter Bent Brigham Hospital and the NHLBI.

Throughout his years in medicine, Dr. McManus has taken on numerous critically important leadership roles including his service to the Myocarditis Foundation for the past 20 years. His body of work includes approximately 450 peer-reviewed articles, more than 60 book chapters, several edited books, and hundreds of invited presentations made throughout the world. He continues to work collaboratively with other scientists and clinicians, having been especially devoted to the training and development of aspiring professionals in the health sciences. He has engaged with and continues to provide guidance in the public and private sectors for the advancement of new preventives and therapeutics in the realm of heart and vascular disease.

Dr. McManus has been lauded in Canada and internationally for his impact, productivity and inspiration as a clinician, educator, researcher and leader. His scientific contributions have been deservedly recognized through many awards and distinctions and such reflect a career built on excellence. Of note, he was elected as a Fellow of the Royal Society of Canada, and he was inducted into the Order of Canada and the Order of British Columbia.

Dr. McManus joined the Myocarditis Foundation (MF) in 2005 as a Founding Member of our Medical Advisory Board. He has served faithfully, and so very well. The MF awarded two research grants to two of his senior cardiology research fellows: Dr. David Marchant and Dr. Paul Hanson. We are so grateful to have had a clinician-scientist of his gravitas in our court. Thank you, Dr. McManus.

Akira Matsumori received his M.D. and Ph.D. degrees from Kyoto University School of Medicine, Japan. He is the founder and current president of the International Society of Cardiomyopathies, Myocarditis and Heart Failure as well as serves as a Visiting Director at the Clinical Research Center of the Kyoto Medical Center. He has served as Secretary of the World Heart Federation, President of the Asian Pacific Society of Cardiology, and has also been an Instructor and Visiting Professor at the Harvard Medical School.

Dr. Matsumori’s research interest includes pathogenesis of heart diseases, biomarkers and therapy of heart failure, cardiomyopathies and myocarditis, and the roles of viruses, cytokines, immunity and inflammation in cardiovascular, cardiometabolic and non-communicable diseases.

 Dr. Matsumori received Japan Heart Foundation Sato Award and Mochida Memorial prize for basic and clinical research on cardiomyopathies and myocarditis. He published 239 peer reviewed articles in English.

Dr. Matsumori is an impressive international figure in the development of myocarditis diagnosis, treatment and research. He has been with the Myocarditis Foundation since our beginning in 2005 as a member of our Medical Advisory Board. We have been extremely fortunate to have someone of his reputation associated with our organization. Thank you, Dr. Matsumori, for your dedication and service.

The disease took us by surprise. To describe Giant Cell Myocarditis as a catastrophic disease is an understatement. Within days, I was fighting for my life. The worst part was that no one seemed to know what it was or how to treat it. Other hospitals fought to keep me alive, even though they had no idea what they were dealing with. In the midst of cardiogenic shock, I was vaguely aware of all these issues. Then I was transferred to New York Presbyterian Hospital and was admitted directly to Critical Coronary Care. I had spent the summer crewing on Long Island Sound. I was in the best shape of my life. This was incongruous; I knew I did not have vascular heart disease. You know the rest of the story.

The doctors at Columbia knew exactly what myocarditis was and they consulted with Dr. Cooper at the Mayo Clinic to make sure that all the latest treatments were considered. Because I had access to the very best minds, from the leading medical institutions, and the latest treatments available, I had the best chance possible to survive.

 In my recovery, in an effort to learn as much as I could about the disease that inexorably derailed my life, we arranged to meet Dr. Cooper and asked, “How can I thank you?” And he shared his plan to start an advocacy group for myocarditis victims. The Myocarditis Foundation was born.

My husband had been my caregiver, head of my support team and faithful witness to everything that had happened throughout the critical phase of my illness while holding down his own job and our health insurance in his employment as a pharmaceutical executive.

Parallel to the development of the Myocarditis Foundation, I experienced many hospitalizations, outpatient visits and tests, medications and medication reactions, rejections, surgeries. I could not have survived either the challenge of living as a transplant or founding the Myocarditis Foundation as its first Executive Director without his support. Our goal remains: to prevent other families from having to suffer like we did.

The year was 1970. Joe had developed a case of mononucleosis. No one was aware that this everyday virus was what most likely left his heart severely damaged years later.

28 years later, at the height of his career as the Managing Director of a national insurance company, his native heart was severely failing. Medication worked for a while, but even after a few years, that failed him. He was gifted with a transplanted heart on Thanksgiving Day in 2006. This was both his original birthday as well as his new birthday. So much to give thanks for on Thanksgiving Day!

I had met Joe and his wife Genevieve at NY Presbyterian Hospital shortly after his transplant. I had invited Joe to join the newly formed Myocarditis Foundation. He had told me that he wanted to help others, and to give back for the miraculous opportunity that he was given for a chance at a second life.  Throughout his tenure in a variety of positions to the Myocarditis Foundation, he has also been a patient: routine visits, crises, hospitalizations and doing his best to maintain his health.

Genevieve and Joe married after college. Genevieve became a nurse. While Cardiology was not her preferred area of nursing, it soon became that due to Joe’s medical situation. Myocarditis has been part of their lives for as long as they’ve known each other. Throughout his tenure in a variety of positions to the Myocarditis Foundation, he has also been a patient with routine visits, crises, hospitalizations and doing his best to maintain his own health while helping others.

Joe was elected to the Board of Directors in 2007 and has contributed mightily to the success of the Foundation. His business acumen has been invaluable to our financial success. As well, he will be hosting the 18^th Annual MF Golf Fundraising in August 2025. Turns out he does many things well.

Genevieve was recruited to become the Executive Director in 2015. Genevieve had over 40 years of Nursing and Administrative experience in Nursing Facilities, specializing in Cardiac Intensive Care Unit (CCU), Emergency Room Nursing, (Adult and Pediatric), and ensuring that the appropriate care is given to those being cared for in medical facilities, and the reviewing of medical records as a Legal Nurse Consultant.

She initiated many new programs at the Myocarditis Foundation and here are some to name a few: International Zoom calls bringing victims, families, researchers and physicians virtually face to face for real time answers to questions from the experts; providing educational information and training on how to help to diagnose myocarditis for nurses in Emergency Rooms, Pediatric Nurses Practitioners and other specialty settings ; and finally she developed an elementary education program introducing children to myocarditis on Rare Disease Day.

Genevieve has always been attentive to answering calls and emails, 24/7 from families in crisis. She understands the immediate need that is often sought after from patients and their families, as she has been there and seen it first -hand.

The Foundation would not have been as successful without their collective contributions to our organization. Thank you, Genevieve and Joe, does not seem sufficient enough. You know that we truly have appreciated everything that you have done for and continue to do for the Myocarditis Foundation.

Dr. Bettina Heidecker, MD, was one of our first Fellowship Grant Recipients in 2006 and later became a member of the Myocarditis Foundation’s Medical Advisory Board and currently serves as a member of the Board of Directors. Presently she is a professor (W3 professorship) for cardiomyopathies at the Charité Campus Benjamin Franklin in Berlin and is the head of heart failure and cardiomyopathies.

The Charite University Hospital complex is one of Europe’s largest clinics and has a long history which was established in 1710. More than half of Germany’s Nobel Prize winners in medicine and physiology have worked there. Dr. Heidecker has been working alongside highly esteemed physicians and cardiologists. She is currently working in the clinical setting caring for patients with heart failure and cardiomyopathies and teaching the next generation of physicians about myocarditis and its varied clinical presentations. Dr. Heidecker’s established a research laboratory at the Charite, to continue her work looking for an early detection tool for myocarditis and improved therapies for the disease.

Earlier in her career, while at the University of Zurich, she worked as a non-invasive cardiologist in 2015, where she established a specialty clinic for myocarditis. Dr. Heidecker, with her clinical research team, also introduced a screening algorithm that increased the number of detected cases with myocarditis in a year, giving us a clearer picture of the incidence of this disease. The data was subsequently published in the Journal of the American College of Cardiology Heart Failure.

Dr. Heidecker has earned many awards nationally and internationally, is a very highly published author on myocarditis and cardiomyopathies and has written book chapters on Acute Fulminant Myocarditis (along with Dr. Leslie Cooper, of the Mayo Clinic) and a chapter in The Handbook of Genomic Medicine (along with Dr. Joshua Hare, of the University of Miami).

We’ve watched Dr. Heidecker’s career grow over twenty years while she has become a highly respected major player in the field of myocarditis.  We are proud to have been part of her career by funding her early research. She has remained committed to myocarditis over these last 20 twenty years and has contributed significantly to what we know about the disease. We couldn’t be prouder.

Congratulations Dr. Heidecker!

Dr. Schultz’s primary interest in pursuing a medical degree was her love of science and desire to apply her medical knowledge to the care and healing of patients. She was, and continues to be, particularly interested in the pathophysiology of disease processes. Her training in pathology along with her special interests seemed to perfectly compliment engagement with the founders of the Myocarditis Foundation. A Foundation dedicated to raising awareness of myocarditis, supporting the funding of myocarditis research, and providing emotional support and a communication forum for myocarditis patients and their families.

Dr. Schultz agreed to serve on the Myocarditis Foundation board of directors in 2005. As a board member, she assisted the founders in the creation of the Foundation’s basic structure. Her contributions included website design, generation of website digital content, creation and editing of written medical brochures, and serving as a co-financial advisor.

The Myocarditis Foundation was built on the fundamental principles of professionalism, compassion, objectivity and excellence. Dr. Schultz is proud to have worked alongside the founders and others during the formative years of this remarkable entity. She is dedicated to provide continuing financial support where it is most needed.