Brisan and Parker Stults | Living with Niemann-Pick Type C

National Niemann Pick Disease Foundation

The National Niemann-Pick Disease Foundation is a non-profit [501(c)(3)] organization that supports and promotes researchto find a cure or treatments for all types of Niemann-Pick Disease and provides support services to individuals and families affected by the disease.

Organizational History

On February 10, 1992, six families with children suffering from Niemann-Pick disease met at the National Institutes of Health at Bethesda, Maryland.  Concerned with cutbacks in funds for medical research and knowing without research there was little hope for their children, they decided to form a foundation – The Niemann-Pick Type C Foundation, Inc. By-laws were drafted and a board of directors was selected. Service activities began immediately and the first year saw many accomplishments.

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-Pic 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.