Ara Parseghian Medical Research Foundation
A Goal For Life
The Faces of NPC
Quote from ara
Video 1




ND Cycling Team raising money

YouTube-Celebrating Ara's 90th B'Day

Survivor Tales
Legacy of Hope part 1

Legacy of Hope part 2

University of Notre Dame: Fighting For The Lives Of Children

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Niemann-Pick Type C is a genetic, cholesterol storage disorder that primarily strikes children with death occurring before or during adolescence. There is also an adult onset form of the disease.

 The Ara Parseghian Medical Research Foundation is a non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease. The Parseghian Foundation is named in honor of Ara Parseghian, the much beloved and well-known Notre Dame Football Coach, whose three youngest grandchildren were diagnosed with NP-C in 1994. 

Medical research is the key to saving the lives of all those around the world afflicted with Niemann-Pick disease. You can help by donating to the Ara Parseghian Medical Research Foundation. Thank you.

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Upcoming EventsJune 4-7, 2016
The annual Parseghian Scientific Conference” for Niemann-Pick Type C

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APMRF Newsletter

A Goal for Life - The Newsletter of the Ara Parseghian Medical Research Foundation.

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A Message from Ara

Our hearts are broken. The pain of losing our three youngest grandchildren is almost unbearable.

Ara Message
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Jim Click 2015 Mustang Raffle

Jim Click automotive Team presents the 2015 Ford Mustang, 50th Anniversary Edition Raffle. With your $25 contribution (or 5 tickets for $100) you could win a 2015 Ford Mustang, 50th Anniversary Edition, valued at approximately $46,995. For those who purchase tickets from the Ara Parseghian Foundation, you will also be entered into the Parseghian Foundation Give-Away. Click here for an order form OR click here to purchase tickets online.

Vtesse Clinical Trial Support Letter

August 4, 2015


Dear NPC Patient Community:


It is hard to imagine how far we have progressed with the research and development of potential treatments for Niemann-Pick C. The entire community deserves to be commended on the hard work and dedication it has taken in order to get us to this point. Our community is in a position that many other rare disease communities strive to achieve. Researchers, companies, and even investors are focusing on developing treatments for NPC.


This influx of activity leaves us in a position of great hope, but at the same time, it also leaves us in a position of great concern. The concern is this: can this small patient community support potentially three clinical trials all at the same time? It is one of those “good problems to have,” but if the answer is “no,” then our hopes and our chances of having approved products for NPC patients are greatly diminished.



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Helping KidsSadly, the Parseghian family has lost Michael, Marcia and Christa to Niemann-Pick Type C disease.  Their hearts will be forever broken.

Their resolve, however, to continue the fight against NP-C disease is not broken.  The Parseghians and thousands of volunteers and friends across the US and around the world are raising funds and pushing medical research so that a treatment can be found.

Please help us in this valiant effort so that everyone afflicted with Niemann-Pick around the world can live to realize their hopes and dreams. Thank you.


Hope for KidsWe Need Your Help!
.Angel Twins
.BReaK Thru Fund
.Fight For Jessica
.Help Kevin
.Hadley Hope
.See More >>


© 2008 Ara Parseghian Medical Research Foundation
Mailing Address: 4729 E Sunrise Dr. #327, Tucson, Arizona 85718-4535,

Phone: (520) 577-5106 Fax: (520) 577-5212, E-Mail: