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Jenny Lardner's Fundraiser:

Road To Discovery in aid of Niemann-Pick Type C (NPC) and rare disease research

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Jenny Lardner

THE STORY:

Students of the ESTEEM program in collaboration with the College of Science are organizing a four-day bike ride from May 8th to 11th, 2016 with a goal of raising $150,000 for Niemann-Pick Type C (NPC) and rare disease research. The 350 mile bike ride will begin in Louisville, KY. on May 8th and conclude in South Bend, IN. on May 11th. Please consider making a donation at one of the following levels: • A donation of $10/mile $3500 • A donation of $1/mile $350 • A donation of $.10/mile $35 Niemann-Pick Type C Niemann-Pick Type C (NPC) is a rare and deadly neurodegenerative disease that primarily strikes children before or during adolescence. An inherited cholesterol metabolism disorder, NPC strikes one in every 150,000 children. Sadly, three of legendary Notre Dame football coach Ara Parseghian’s grandchildren were diagnosed with the disease. The family could have given up, but they did not. They sought to save their children’s lives by launching the Ara Parseghian Medical Research Foundation. Since 1994, they have raised money to fund research, and today we know a great deal about the once-obscure disease, thanks to their courage, perseverance and commitment. They eventually lost the three children with NPC, Marcia, Christy, and Michael, but their fight continues to find a cure for all of those other families and children facing this fatal disease. The University of Notre Dame formed a partnership with Ara Parseghian Medical Research Foundation to fund NPC research. At the same time, the university of Notre Dame and their collaborators have made tremendous progress against NPC. There are currently over eight faculty members at Notre Dame conducting NPC research, and they have developed a promising treatment discovered by medicinal chemistry Professor Paul Helquist and his collaborators that is in FDA clinical trials. Now, the University is poised to launch the Ara Parseghian Medical Research Fund that will take on the roles and responsibilities of the Foundation and drive the Foundation’s research efforts to find a cure.

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