Niemann-Pick Type C Conference Comes to Notre Dame

The Science Team

Next to the children and families who inspire us all, I find myself energized in the fight against NP-C by the dedication and determination of the researchers that are on

Ara Parseghian opened the conference on Thursday afternoon.

the front lines for us. The Michael, Marcia, and Christa Parseghian Scientific Conference for Niemann-Pick Type C Research was an amazing showcase of the progress we’ve made. I am thrilled that it’s going to be a permanent part of our life at Notre Dame.

The three days were packed with half-hour presentations from scientists from around the world – Australia, Germany, Switzerland, Brazil, France and Canada – as well as leading U.S. universities such as Purdue, Rutgers, Stanford, UT-Southwestern, California-San Diego, Rush, Columbia, Cornell, Washington and Case Western Reserve. Of course, I am especially proud of our strong Notre Dame presence. Kevin Vaughan, Holly Goodson, Rich Taylor and Crislyn D’Souza-Schorey chaired sessions. Olaf Wiest, who holds a summer teaching appointment in China, was video-fed in from Hong Kong to open Friday’s session, and Kevin Vaughan and Kasturi Haldar gave presentations as well.

The scientists are leaving no stone unturned in their search for a cure. They’re looking at drugs already approved for other diseases, at new compounds that might hold promise against NP-C and at combinations of drugs. Sessions at the conference covered molecular biology, drug discovery, cell biology, neurology, clinical studies and cyclodextrin, a compound that has been shown to help transport cholesterol out of lysosomes in NP-C patients.

Ara Parseghian briefly spoke to NP-C researchers and family members at the beginning of the conference.

One of the participants pointed out that the Ara Parseghian Medical Research Foundation has made so much progress because of its rigorous approach to science and evidence-based decisions. It’s important to keep that game plan, he said, now that we’re driving for the touchdown deep in the opponent’s territory. We’re all looking forward to the conference at which we get to celebrate that victory – the cure.



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