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We invite you to read our newsletter, "A Goal For Life", which provides quick and easy access to information about what's new at Ara Parseghian Medical Research Foundation, research updates, fundraising stories and features about NP-C patients and families.

To the left, you can view videos that include messages from Cindy Parseghian and an interview with Ara Parseghian.

Spring 2010 Newsletter

“Hoops for Hope”. . . Competing together for a cause . . . In the weeks leading up to the annual boys basketball game between rivals Harrison High School and West Lafayette High School in West Lafayette, IN, the two schools join together
to raise money for a charitable cause with an event called “Hoops for Hope”. This year the Student Council chose the Smith Family BReaK Thru Fund, a research fund that supports the Ara Parseghian Medical Research Foundation. Students and fans purchased t-shirts to wear to the February 19th basketball game generating $13,500 for NP-C research! The Smith family has 4 children, 3 with NP-C disease. Sadly, Braden, age 10, died in 2006.

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Winter 2009 Newsletter

Heartfelt Thanks

The Notre Dame Club of Milwaukee hosted the ninth annual “Ara’s Outing 2009” in Brookfi eld, WI this past July. More than a dozen from “The Era” travelled to Milwaukee to honor Ara. 150 alumni and friends – including 13 Irish football players from the period of 1964- 74 – joined in the festivities at the beautiful Westmoor Country Club on Monday, July 13 to raise money for the Ara Parseghian Medical Research Foundation (APMRF). Standing in for the Hall of Fame coach who was unable to attend, alumna and daughter-in-law, Cindy Parseghian, the APMRF’s president, thanked the attendees for the Club’s nine years worth of contributions, saying that it has accounted for more than $150,000 toward research to fi nd a cure for NP-C.

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Summer 2009 Newsletter

NP-C Annual Scientific Conference

In June, eighty researchers from around the world convened a meeting to discuss the advances in Niemann-Pick Type C (NP-C) disease research. These meetings were funded by generous grants from the Bacon Family Foundation and the C. R. Bard Foundation, Inc. In addition to the research presentations spanning
two and half days, a full day was also devoted to the fi rst ever clinical workshop cosponsored by the National Institutes of Health.
A summary of the presentations is provided inside this newsletter.

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Spring 2009 Newsletter

Zavesca Approved in Europe

The APMRF has been intimately involved in helping to fund and speed development of the drug Zavesca, which led to a clinical drug trial. We are very excited to announce that Zavesca has been approved for treatment of patients with NP-C disease in Europe. Our hope is that the Food and Drug Administration
(FDA) in the US will soon follow the lead of their European counterpart and approve the drug for US patients.

Through funding provided by the Parseghian Foundation, Dr. Steven Walkley of Albert Einstein College of Medicine in Bronx, NY administered Zavesca to NP-C mice. He found a positive affect and after a number of years, this led
to the first-ever clinical trial with NP-C patients.

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