Discover How a 49-Year-Old Patient Survived Giant Cell Myocarditis

Dr. Cooper Partnered with Survivor to Start Foundation 

Dr. Cooper Partnered with Survivor to Start Foundation
Dr. Leslie Cooper

When I was a cardiology fellow at Stanford University, I had a patient, a young woman who died of giant cell myocarditis. I remember feeling helpless as there was no treatment available that could have changed the course of her life. After her death, myocarditis and specifically giant cell myocarditis became the focus of my medical research.

Many years later, I am happy to report that advances in treatment, diagnosis and protocol have saved more lives from this disease; however, we still have a long way to go. Far too many families lose loved ones prematurely from this tragic disease.

In 2001, I received a call from Dr. Mario Deng at Columbia Medical Center asking me to consult on a case regarding a 49 year old woman who he suspected had giant cell myocarditis.

Though Candace was too ill to be enrolled in the Giant Cell Myocarditis Treatment Trial I was leading, an alternative therapy was recommended that successfully enabled Candace to live long enough to receive a new heart.

In her recovery, she called and asked what she could do for me, and I said that we needed to form a foundation, to raise money for myocarditis research and to be a clearinghouse of information for physicians, patients and families who lost loved ones.

The Myocarditis Foundation was officially approved as a 501C3 nonprofit in 2005. Now our website draws over 325,000 visits per year. Affected patients and families hold awareness events and raise money for research all over the country. We have given over $300K away to aspiring myocarditis investigators who have made great strides in advancing our understanding of this disease.

Until we have faster, more effective diagnostics and treatments, we have more work to do. I am the founding President of the Board of Directors and plan to continue to serve and mentor the next generation of leaders in the field of myocarditis so that they can continue the work we have begun through the Myocarditis Foundation.

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