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Science dean biking 3,250 miles to bring attention to rare disease research

Author: Marissa Gebhard

Road to Discovery

Greg Crawford, dean of the College of Science at the University of Notre Dame, will be cycling 3,250 miles from Boston to Pebble Beach, Calif., to raise awareness and funds for research to find a cure for Niemann-Pick Type C (NPC) disease. His third cross-country ride will start May 21 (Monday) and conclude June 22 (Friday), in time for the Parseghian Classic, a golf fundraiser at Pebble Beach Resorts.

The “Road to Discovery” bicycle ride demonstrates Notre Dame’s commitment to research to find a cure or treatments for the devastating disease that took the lives of three grandchildren of former Notre Dame head football coach Ara Parseghian.

The genetic, fatal neurodegenerative disease, which prevents the body from effectively processing cholesterol, primarily strikes children, who succumb to the disease before or during adolescence. Researchers have identified its cause and made significant progress toward treatment in recent years, but there is still no cure.

Last summer, Crawford and his wife, Renate, rode from Boston to Dallas, visiting families with children affected by the disease as well as other research centers across the country that also investigate NPC. This summer, Crawford will visit Notre Dame Clubs and families affected by NPC on the ride through Connecticut, New York, Ohio, Indiana, Illinois, Iowa, Nebraska, Colorado, Utah, Nevada and California.

Road to Discovery

Crawford is dedicated and motivated to fight the disease. He says, “It’s part of our mission to find an end to this disease. There are so many great minds out there, and so many partners who share a passion to get rid of this rare disease. We are particularly inspired by the Parseghian family and are honored to partner with them in the fight against NPC.”

“Notre Dame researchers are at the forefront of NPC research, and their advances in the understanding of this disease give hope to all NPC children and their families,” says Cindy Parseghian, who co-founded the Ara Parseghian Medical Research Foundation just two months after three of her four children were diagnosed with NPC.

The traditional summer bike ride started in 2010 when the Crawfords rode together from Tucson, Ariz., where the Parseghian Foundation started in the mid-1990s, to Notre Dame to symbolize a newly strengthened partnership between the Ara Parseghian Medical Research Foundation and the University.

Michael, Marcia and Christa Parseghian

Through the Michael, Marcia and Christa Parseghian Endowment for Excellence at Notre Dame, NPC researchers at the University and other U.S. institutions collaborate with other NPC researchers, parents and clinicians in Australia, Germany, Switzerland, Brazil, France and Canada to bring together expertise in molecular biology, drug discovery, cell biology and neurology, with results from clinical studies.

This time, the trip is coast-to-coast, starting in Boston on May 21 and concluding at Pebble Beach, where the Parseghian Classic will be held June 22-24 at Pebble Beach Resorts to raise funds for NPC research at Notre Dame and other institutions.

Visit the dean’s blog to read daily entries about his ride, the inspiring parents of children with NPC and the supportive Notre Dame family he will meet along the route.

Contact: Marissa Gebhard, 574-631-4465,

Originally published by Marissa Gebhard at on May 11, 2012.