The legendary Notre Dame football coach Ara Parseghian lost three of his grandchildren to Niemann-Pick Type C, a rare and fatal genetic disease. Parseghian’s story has helped mobilize members of the Notre Dame community, and in particular, Greg Crawford, Dean of the College of Science and professor of physics, in a fight against the disease. Crawford has been named a finalist in the Biotechnology Industry Organization’s Everyday Superheros contest in recognition for his work in raising funding and awareness to combat Niemann-Pick Type C. We spoke to Crawford about his involvement with the disease, his series of cross country bike rides for the cause, and what advice he’d offer other patient advocates looking to raise money and awareness.
RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here.