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Ara Parseghian Medical Research Foundation

The Ara Parseghian Medical Research Foundation is a grassroots, non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease and related neurodegenerative disorders.

The Foundation was founded in 1994 by Parseghian family members shortly after they learned that three of the four children of Mike and Cindy Parseghian were diagnosed with NP-C disease. The Foundation is named after Ara Parseghian, the legendary Notre Dame Football coach and the children’s grandfather.

The Ara Parseghian Medical Research Foundation was incorporated in the state of Arizona in October 1994 and received 501(c)(3) status in December 1994. Their EIN tax # is: 86-0775966.

The Parseghian Foundation’s operations are made possible through the efforts of a dedicated army of volunteers. This includes a group of respected and accomplished biomedical scientists and clinicians who serve as members of the Foundation’s Scientific Advisory Board (SAB).

The SAB has worked diligently to recruit top scientists into the field, to help formulate the direction of Foundation-sponsored research, and to evaluate grant proposals solicited by the Foundation.

As of January 2009, 25 medical research projects are being funded by the Foundation in the United States and throughout the world. Another 50 grants have been funded by the Parseghian Foundation in the past.

Of the more than 400 rare disease organizations in America, the Parseghian Foundation is a leader in raising funds totaling $33 million in fourteen years. Administrative cost are held to a minimum due to the remarkable support of their Tucson Volunteers, as well as many others across the country who have stepped forward to help including many other NP-C families as well as Notre Dame alumni.

Each year the Foundation raises approximately $2.3 million through fund-raising events, personal and corporate contributions. Nearly 88 of all funds raised go to research helping not only those suffering from NP-C, but from other cholesterol-related diseases such as stroke and heart disease, as well as Alzheimer’s. The link between NP-C and Alzheimer’s is becoming more and more apparent each day.

The Parseghian’s son, Michael, lost his battle with NP-C in 1997 at age 9. Christa passed away in October of 2001 at the age of 10. Marcia died in 2005 at the age of 16. They are deeply missed. The battle continues to try to save the lives of thousands of other NP-C children and young adults around the world. The Parseghian family and hundreds of volunteers around the country are more determined than ever to conquer this disease. Thanks for your support.

Hope continues.

Strengths of the Ara Parseghian Medical Research Foundation:

• Prominent National Board of Directors with Ara Parseghian as the chairman and 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 and the may fund-raising events
• Extensive medical and scientific community support of NP-C research
• Widespread support from individuals, corporations, foundations and many other NP-C families who have made contributions ranging from $1 to $250,000
• Efficiently structured organization able to move contributions directly into medical research
• Overhead and administrative costs held to approximately 12% due to in-kind donations for printing, legal and accounting services, volunteer office support and event underwriting
• National and local media coverage