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How She Got There: Candace Moose, Co-Founder at Myocarditis Foundation


Name: Candace Moose
Age: 64
Job Title and Description: Co-Founder at Myocarditis Foundation
College Name/Major: Bachelor of Science in Liberal Arts from Cedar Crest College, Bachelor of Science in Nursing from Cornell University/New York Hospital School of Nursing, Masters of Education from College of New Jersey
Website: www.myocarditisfoundation.org

In your own words, what is the Myocarditis Foundation?

Candace Moose: It has a three-fold mission with a single goal. We strive to raise money for research, educate the public, and support patients diagnosed and families who lost loved ones to the disease. Our singular goal is to save lives from this disease. We don’t have a handle on how many cases of this disease there are in the U.S. per year, but it is believed that anywhere from five to 20 percent of sudden deaths in young adults are caused by myocarditis.

We are the only organization worldwide that’s singularly devoted to ending myocarditis. There are other organizations that address a variety of rare diseases, but our foundation uses resources specifically for myocarditis.

What inspired you to get involved?

CM: After retiring from 29 years of nursing, I wanted to devote the rest of my life to AIDS in Africa. I thought my professional experience prepared me and I wanted to be part of some sort of global initiative to decrease the impact of AIDS on the very poor population of Africa. I signed up to go on a trip to Malawi in 2001, requiring two immunizations from the CDC. After receiving this, my heart started acting up and within a week, I had coded three times. I was diagnosed with viral myocarditis and had a defibrillator inserted.

Just a day later, I went into cardiogenic shock. The chances that I’d make it through the night were slim, but I did—now I needed a heart transplant. I was transferred to Columbia the next day, where I met Dr. Deng and an expert on myocarditis, Dr. Leslie Cooper from the Mayo Clinic.

It was because of them and the heart transplant I received from a 17-year-old boy that I survived. I wanted to give back, so I collaborated with Dr. Deng and Dr. Cooper to form the Myocarditis Foundation to help other patients.

What was the process of writing your book like?

CM: Writing the book was cathartic. There were gaps in my awareness of what had happened to me, so I requested my medical records to help me understand the chronology of events and the physicians’ impressions of how I was doing. I also wanted to know what my family was doing and thinking as my illness progressed. So I kept asking them to fill in the gaps. What started as an exercise to record what had happened to me, ended up being a lengthy document. It turned into a book when I dropped off the manuscript to an editor who promised to read it and get back to me in several weeks. She called early the next morning to say that she had been up all night reading the manuscript and she thought it was wonderful. I had never considered myself a writer, but I knew I had a powerful story to tell.

What’s been the most surreal moment for you and why?

CM: At the time of the transplant, your physicians are allowed to tell you the sex, age and geographic region of the country your donor came from. I did not want to know because I could not handle the suffering the donor’s family was going through in addition to all the suffering my family and I had experienced. Two years into my recovery, I asked my doctor to share the information about my donor. In my heart, I knew it was a teenaged boy. I was right.

What words of wisdom do you find most valuable?

CM: Listen to your intuition and take care of your body. 


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