Patch Blogger: Notre Dame Couple Bikes for a Cure; Stops in Mattituck

Parked on the side of the road in Mattituck on Wednesday morning was a bright green van with the University of Notre Dame insignia attracting my daughter's attention. Upon investigation we discovered a few cyclists stopping for a water and nutrition break. It turns out a husband and wife team had just embarked on their second cross-country bike tour to raise awareness about Neimann-Pick Type C disease (NPC), a genetic metabolic disorder that sadly shortens the lives of too many children. Last year's journey was from Tucson, AZ to South Bend, IN covering 2,300 miles! Greg Crawford, Dean of the University of Notre Dame's College of Science, and his wife, Renate, courageously set out from Boston this past Monday on a trek down the east coast of the U.S. and then will head west to arrive in Dallas, Texas by July 8.

Inspired by the famed Notre Dame Football coach, Ara Parseghian, who has lost three grandchildren to NPC and who founded the Ara Parseghian Medical Research Foundation, the Crawfords hope to raise awareness and funds for research and hopefully a cure of the disease that mainly affects yound children. Dean Crawford explained the disease involves a problem with metabolizing cholesterol and it accumulates in several organs (spleen, lungs, bone marrow, and brain, among others). Renate further explained that the symptoms can mimic something akin to "childhood Alzheimer's." Furthermore many of those stricken with NPC won't live beyond twelve or thirteen years of age.

Ara Parseghian coached at Notre Dame from 1964-1974 and was inducted into the College Football Hall of Fame in 1980. He later was a color analyst for both ABC and CBS Sports. Ara's namesake grandson rode the first leg from Boston to Providence, R.I. with the Crawfords. After riding to Mystic, Conn., Greg and Renate crossed the Long Island Sound by ferry to ride through our lovely North Fork of Long Island with the goal of making it to Great Neck by the end of the day.

The Crawfords' updates are said to be viewed by visiting roadtodiscovery.nd.edu  No link was found, but at the time of this writing I found other blogs with updates.