Ara Parseghian Medical Research Foundation
A Goal For Life
The Faces of NPC
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YouTube-Celebrating Ara's 90th B'Day

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Legacy of Hope part 1

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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 EventsJune 11–13, 2015
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.


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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Features


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.


DEPARTMENT  OF  HEALTH  &  HUMAN  SERVICES National Institutes of Health

We would like to update the NPC1 community on the work that we are doing at the NIH.

Phase I HPBCD Trial

We continue to escalate the dose of HPBCD. We are currently evaluating 900 mg and will soon investigate 1200 mg. The children and young adults in the trial have been doing well and, with the exception of hearing loss, the drug has been well tolerated. The hearing changes were expected based on the animal testing and these changes range from very minor and not noticeable by the patients or their families, to more significant hearing loss affecting the speech recognition frequencies of hearing at the higher doses.

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

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