Ara Parseghian Medical Research Foundation

aka APMRF   |   South Bend, IN   |  www.parseghian.org

Mission

The Ara Parseghian Medical Research Foundation (APMRF) was founded in 1994. It is a grass-roots, 501(c)(3) organization involving volunteers across the country which funds research projects that will lead to a treatment for Niemann-Pick Type C disease. NP-C is a genetic disorder that usually affects children by interfering with their ability to metabolize cholesterol. The disease is progressive and always--until we find a cure--fatal.
The Foundation is named in honor of Ara Parseghian, the legendary Notre Dame football coach, whose three youngest grandchildren in Tucson were diagnosed with the disease in 1994. Michael, age 9, died from the disease in 1997. Christa, age 10, passed away in October 2001 and Marcia in August of 2005.

Ruling year info

1994

Principal Officer

Mr. Glen Shepherd

Main address

University of Notre Dame 215L Jordan Hall of Science

South Bend, IN 46556 USA

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EIN

86-0775966

NTEE code info

Fund Raising and/or Fund Distribution (G12)

Neurology, Neuroscience (H96)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

The only hope to save the lives of children and young adults afflicted by NP-C is through medical research, which is very expensive. The volunteers and staff of the Parseghian Foundation work diligently to raise more than $2.5 million each year through many fund raising events held in Tucson and across the country. Also, thousands of individuals and businesses donate each year.
A diligent review of more than 30 grant applications each year by our highly qualified Scientific Advisory Board ensure that funds are given to qualified researchers who will help discover a treatment for the disease. The Foundation has been able to attract leading scientists into the field over the years. NP-C has become well known amongst the scientific community in spite of the fact it's a rare disease thanks to the efforts of the Parseghian Foundation and the more than $33 million that has been raised.

Population(s) Served

Where we work

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Financials

Ara Parseghian Medical Research Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Ara Parseghian Medical Research Foundation

Board of directors
as of 3/26/2017
SOURCE: Self-reported by organization

Ara M. Parseghian

Bernard A. Buescher, Esq.

Arthur J. Decio

James F. Burke, Esq.

Cindy K. Parseghian President

Ara Parseghian Chairman

Michael A. Parseghian, M.D. Secretary/Treasurer

Michael S. Parmacek, M.D.