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Partnership with University of Notre Dame
The University of Notre Dame has launched the Ara Parseghian Medical Research Fund which will take on the administrative functions of the foundation including fundraising, recruiting of researchers, grant administration, marketing, interaction with NP-C families, and hosting of the annual science conference. The Parseghian Family will continue to be intimately involved with the fundraising efforts and will act as advisors to the new fund. A great deal of attention has been focused on this transition to ensure that the work we started over 22 years ago continues advancing the field of NP-C research. We hope you will continue your support of the Ara Parsehian Medical Research Fund. For more information visit http://parseghianfund.nd.edu/
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Our hearts are broken. The pain of losing our three youngest grandchildren is almost unbearable.
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Notre Dame Cycling Team raises money for the Parseghian Foundation Niemann-Pick Type C (NP-C) disease Research News
One Family’s Fighting Spirit - Read The Parseghian Family Story
More About Niemann-Pick - Read an overview of the disease diagnosis, symptoms and treatment.
Research on NPC -Articles on Potential Therapies -NIH Clinical Trial Begins for NPC
Contact us about getting involved in the fight against Niemann-Pick disease.  |
VTESSE VTS-270 Clinical Trial: The Patient Experience
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.
Sadly, 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.  
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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.
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