Ara Parseghian Medical Research Foundation
A Goal For Life
The Faces of NPC
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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 11–13, 2015- The annual Scientific Conference for Niemann-Pick Type C Disease will be held on the University of Notre Dame campus.

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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

 

National Institutes of Health Announcement- Hope for NPC Patients

DEPARTMENT OF HEALTH & HUMAN SERVICES National Institutes of Health

We are pleased to inform the NPC community of an upcoming clinical trial at the NIH to study the safety and tolerability of vorinostat in adults with Niemann-Pick disease, type C1. We plan to begin enrolling patients in September 2014.

This clinical trial is an open label study for 12 patients. “Open label” means that every patient will get vorinostat. There is no placebo, or sugar pill, in this study. Patients will come to the NIH for a total of 3 visits - at baseline, 3 months and at 6 months for this trial. Each visit will last for about 7-10 days. Patients will start taking the study drug while they are at the NIH and will continue taking the study drug when they return home. They will also need to have blood drawn for safety labs every two weeks between visits while they are at home. After the 6 month visit, they will stop taking the study drug and they will be done with the trial.

Vorinostat is a pill that is taken by mouth. The purpose of this study is to test the safety and tolerability of vorinostat when it is given to adults with NPC1. Patients will have blood drawn and will have a lumbar puncture (spinal tap) to collect spinal fluid at each visit to measure how much of the drug is absorbed. Patients will also have tests of hearing, speech, swallowing and movement.

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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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Vorinostat NIH Trial Announcement
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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