The APMRF is a grassroots, volunteer non-profit organization dedicated to funding research projects to find a treatment and cure for Niemann-Pick Type C disease (NP-C) and related neurodegenerative disorders. In August of 1994, Cindy and Mike Parseghian's seven-year old son, Michael, was diagnosed with NP-C, a genetic neurodegenerative disorder for which there is no cure. Then in September, they learned that Marcia, then age six, and Christa, age three, also had the disease. The Parseghian family was devastated. They came together to grieve and then, with support of friends, decided on a course of action. They started the APMRF to direct research dollars into the study of NP-C and related neurodegenerative diseases. The foundation is named in honor of Ara Parseghian, the much beloved and well-known Notre Dame football coach, who is the children's grandfather. It was incorporated in the state of Arizona in October, 1994 and received 501(c)(3) status in December, 1994.
Strengths of the Ara Parseghian Medical Research Foundation:
- Prominent National Board of Directors with Ara Parseghian as the national spokesperson
- Scientific Advisory Board comprised of internationally recognized geneticists, molecular biologists, neurologists and pathologists
- Dedicated army of volunteers who support the operational functioning of the Foundation
- Extensive medical and scientific community support of NP-C research
- Widespread support from individuals, corporations and other foundations who have made contributions ranging from $1 to $250,000
- Over $27,000,000 have been raised for NP-C research as of March 1, 2007
- Efficiently structured organization able to move contributions directly into medical research
- Overhead and administrative costs of less than ten percent due to in-kind donations of printing, legal and accounting services, volunteer office support and event underwriting
- National and local media coverage of the Parseghian family story
