Ara Parseghian Medical Research Foundation
A Goal For Life
The Faces of NPC
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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 EventsApril 5, 2014
University of Arizona vs Notre Dame at the second annual Ara Parseghian Cup rugby match.

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APMRF Newsletter

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


Newsletter
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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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For each copy of The Night Before My Birthday Book sold on the web site, or by mail, we will donate $1.00 to charitable organizations that support children’s health, safety, and well-being through research and responsive services. The first organization that we are so happy to support is The Ara Parseghian Medical Research Foundation. Find out more at:

http://www.nightbeforemybirthday.com/

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Niemann-Pick Type C (NP-C) disease Research News

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One Family’s Fighting Spirit - Read The Parseghian Family Story

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More About Niemann-Pick - Read an overview of the disease diagnosis, symptoms and treatment.

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Research on NPC
-Annual Scientific Conference
-Scientific Advisory Board

-Articles on Potential Therapies

-NIH Clinical Trial Begins for NPC

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Contact us about getting involved in the fight against Niemann-Pick disease.

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Features

 

HOPE FOR NP-C PATIENTS

 

A clinical trial is expected to begin in the summer of 2014 using a Histone Deacetylase Inhibitors (HDACi). The goal of the Phase 1 clinical trial will be to establish the safety and tolerability of an oral HDACi as a treatment for NPC1 disease.  To meet this objective, researchers at the National Institutes of Health, Mayo Clinic, Washington University and Cornell will develop a Phase 1, first-in-human, open-label, multi-center, dose escalation study of a HDACi in late adolescents and adults with NPC1 disease.  Results from this study will lay the foundation for future clinical trials to assess the effectiveness of an HDACi in slowing disease progression, and may lead to the first FDA-approved drug for the treatment of this devastating disorder. The trial is dependent on an approval of an Investigational New Drug Application (IND) by the Food and Drug Administration (FDA).  

 

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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.

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


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© 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: promano@parseghian.org