Dr. Cindy Parseghian on The Parseghian Family Journey & NP-C Disease

September 4, 2009. Cindy Parseghian, MBA, Ph. D. - President, Ara Parseghian Medical Research Foundation.

in the first presentation of the CRND Clinical Translational Seminar Series, Dr. Cindy Parseghian shared the story of her family's experience with Niemann-Pick Disease type C disease (NP-C) and her work as the President of the Ara Parseghian Medical Research Foundation (APMRF). Dr. Parseghian lost three of her four children to NP-C disease. She has been a dedicated and inspiring leader of APMRF to help find a cure for this disease and prevent the suffering of other families in the future.

APMRF is an non-profit foundation committed to funding medical research projects aimed at developing treatments for NP-C disease. Additionally, this grassroots organization offers supportive services, advocacy and vital information to families through its volunteers and Scientific Advisory Board, which includes leading international experts in the field. In January of this year, 75 medical research projects had already been funded by the APMRF. The Parseghian Family, which included Notre Dame's beloved football coach Ara Parseghian, has created one of the strongest rare disease organizations in the world and with the help of many other families, scientists, and Notre Dame alumni is the leading rare disease fund raiser among hundreds in the country.

Dr. Parseghian sat in on class as students presented their research on families who have children with NPC. The class explored the formation of relationships and networks between families, healthcare providers, public and private researchers, academic institutions, the National Institutes of Health, foundations, community organizations, advocacy groups, pharmaceutical companies, and other stakeholders.

The Parseghian family's story was a focal point of the Fighting For The Lives of Children program, which aired on NBC at game half-time on September 5, 2009.

 

 

 

 

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