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.