Science dean to embark on second ride for rare disease research

Author: Julie Hail Flory

Greg and Renate Crawford

Gregory P. Crawford, dean of the College of Science at the University of Notre Dame, and his wife, Renate, will for the second consecutive year set out on a remarkable bicycle ride this summer to support research seeking treatments and a cure for Niemann-Pick Type C (NPC), a rare and deadly neurodegenerative disease that primarily strikes children before or during adolescence.

The Crawfords will depart June 13 on “Road to Discovery,” a 2,200-mile ride from Boston to Dallas, with stops to visit NPC researchers and families, as well as Notre Dame alumni clubs, along the way.

Last summer the couple successfully completed the 2,300-mile “Desert to Dome” ride from Tucson, Ariz., to Notre Dame in celebration of the University’s newly strengthened partnership with the Ara Parseghian Medical Research Foundation, a grass roots, non-profit organization dedicated to funding medical research projects to find a treatment for NPC and related neurodegenerative disorders. Notre Dame’s former head football coach Ara Parseghian lost three grandchildren to NPC.

“Renate and I have been deeply moved by our experience with NPC families and are committed to supporting the research that ultimately will help them beat this devastating disease,” Crawford said. “Although last year’s ride certainly was physically challenging, we know our efforts do not compare to the ordeals that children with NPC and their parents go through every day. We feel privileged to ride on their behalf and to further the incredible progress the Parseghian Foundation already has achieved and to honor the legacy of the Parseghian family.”

Crawford will document the ride on his blog with updates, photos and video from the road.

“Every long mile Greg and Renate ride on their bikes will help move NPC research closer to a cure,” said Cindy Parseghian, president of the Parseghian Foundation. “They epitomize the commitment of the Notre Dame family to make a difference in the lives of children struggling with the ravages of NPC disease. The Crawfords are a true blessing to all NPC families.”

Through a generous gift to Notre Dame, the Parseghian Foundation last year established the Michael, Marcia and Christa Parseghian Endowment for Excellence to support NPC research and discovery and to build on the Foundation’s commitment to collaborate with young researchers at other institutions.
Funds also were dedicated in support of an annual Niemann-Pick Type C Scientific Conference that will be held for the first time at Notre Dame this week (June 9 to 11), bringing together researchers from around the world to share discoveries and progress on fighting the disease.

Dean of the Notre Dame College of Science since 2008, Crawford is a world-renowned physicist who holds 18 U.S. patents, has more than 300 research and education publications and is the editor of four books. His cutting-edge research on liquid crystals and polymers, nanoscience and photonic materials spans the fields of condensed matter physics, physical chemistry, applied mathematics and biomedical engineering.

Originally published by Julie Hail Flory at on June 06, 2011.