For the past five summers, Greg Crawford, Ph.D., has biked cross-country to raise awareness for Niemann-Pick Type C (NPC) disease, a rare, genetic cholesterol-storage disorder that primarily affects children. NPC is usually diagnosed before or during adolescence, and is always fatal. Former Notre Dame football coach Ara Parseghian lost three of his grand children to the disease. Responding to that terrible loss, Ara and his family founded 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, and have partnered with the University of Notre Dame to find a cure for this disease.
In 2010 and 2011, Greg and his wife Renate, successfully completed bike rides in celebration of the University’s partnership with the Foundation. The first ride took the Crawford’s on a 2,300-mile “Desert to Dome” ride from Tucson, Ariz. to steps of the Golden Dome on the Notre Dame campus. During the second ride, the couple traveled 2,200 miles on the “Road to Discovery” from Boston to Dallas. In 2012, Greg biked 3,250 miles from Boston to Pebble Beach, Calif, visiting alumni clubs and families affected by NPC along the way. In 2013, he traveled 3,450 miles from Long Beach, Calif. to Baltimore, Md., arriving in time for the National Niemann-Pick Foundation Conference. Crawford's fifth and final ride took him from Long Island, N.Y. to Pebble Beach, Calif., for a total of 3,500 miles. His five-year journey accumulated nearly 15,000 miles.
The Road to Discovery bicycle ride represented Notre Dame's commitment to research to find a cure or treatments for the devastating, neurodegenerative disease that has taken the lives of too many children.
"It has been an honor to ride for the children and families affected by NPC, and I am so happy they have embraced the ride and our scientific efforts at Notre Dame. We are on this journey together, and we will keep supporting each other until we have crossed that finish line. Thank you so much for the inspiration you have been to me on this journey across the country." --Greg Crawford
With the goal of saving lives, this partnership will raise funds to support NPC research at Notre Dame and with collaborators around the world. As a result of the partnership, Notre Dame researchers established the Drug Discovery Core, to which any member of the worldwide NPC research community may turn for the design and synthesis of potential drug candidates. Since then, a team of researcher-collaborators from Notre Dame and Cornell uncovered evidence that histone deacetylase inhibitors correct NPC's genetic flaw, which is one step closer in our goal of finding a cure.
Greg's 2015 journey was documented on his daily blog. His blogs have been published to commemorate this journey.