The Myocarditis Foundation, MF, is a private, non-profit organization which was established in December of 2005 when it received IRS 501(c) 3 approval. 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 MF plans to:
• Sponsor conferences and lectures directed to both the public and to physician groups that deal with myocarditis, its causes, symptoms, diagnosis and treatment.
• Serve as a clearinghouse of information about myocarditis, by developing educational materials, pamphlets, and publications for use by the public, families and physicians.
• Maintain 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.
• Provide research grants to organizations or to individuals to conduct research into myocarditis, in an effort to further scientific knowledge of the disease.
• Maintain 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.
The foundation board is comprised of medical professionals with experience in myocarditis and lay persons who have been touched by the disease.
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Candace C. Moose, MF Secretary/Treasurer,
is a Giant Cell Myocarditis survivor and heart transplant of
five years. She is a retired nurse, wife, mother of two children
and grandmother of one, a speaker and advocate for organ donation
and is also the author of the book, The Grateful Heart:
Diary of a Heart Transplant.
Visit: www.thegratefulheartdiary.com |
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Mario C. Deng, M.D.
is the Director of Cardiac Transplant Research at New York Presbyterian
Hospital/Columbia. Additionally, he is a practicing heart failure
and post transplant cardiologist. He has also authored many
scientific publications and most recently served as a board
member of the International Society of Heart and Lung Transplantation. |
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James A. Moose, MBA, is currently the Senior Vice President of Program Management at Talecris Biotherapeutics in Research Triangle Park, North Carolina. Mr. Moose has had a long and varied career in the pharmaceutical industry. He is the husband of GCM patient and board member, Candace Moose. |
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Jeff S. Grant, board
member, is a computer programmer, and a Giant Cell Myocarditis
patient, currently undergoing treatment. Mr. Grant designed
and maintains the gcminfo.org
website which provides information about the disease and a chat
room for patients and their families to share their concerns
and experiences. He and his wife Boni live in Florida.
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The MF is a private non-profit, organization that exists solely to
educate physicians and the public about this rare disease and support
the patients and their families who have been affected by the disease.
Primary sources of funding include corporate grants, philanthropists,
private grants and individuals. Copies of materials are available
without charge. All money donated to MF goes directly to its programs
and services. Copies of the MF annual report are available upon request.
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