Gearing up for a cure

Gearing up for a cure

Dean starts cross-US trip in the region

By Anne Kallas
Special to The Star
Friday, June 28, 2013 - Ventura, California

As the sun battled with coastal fog, five men headed out Wednesday morning for a bicycle ride from Ventura to Malibu as part of a fundraising campaign to raise awareness of Niemann-Pick Type C disease, a rare neurological disorder that is fatal to children it affects.

Greg Crawford, who for the past four years dedicated his summers to raising awareness of Niemann-Pick Type C disease by riding across the country, shakes hands with John Campau before they ride together to Malibu on Wednesday from the Sheraton Four Points hotel in Ventura.

For the past three years, the dean of Notre Dame University’s College of Sciences, Greg Crawford, has spent his summers crisscrossing the U.S. in memory of famed football coach Ara Parseghian’s three grandchildren who died of the disease. This year marks Crawford’s fourth cross country trip, and it began Thursday with a dip of his tire into the Pacific Ocean in Long Beach before the journey to Baltimore via Houston. He expects to reach Baltimore in August.

“Coach Parseghian’s son Mike and daughter-in-law Cindy found out that three of their four children had the disease,” said Crawford, of South Bend, Indiana. “The Parseghian family is so inspiring. They thought they only had one child who was having medical problems, but when the diagnosis came, doctors told them to have all of their children tested. They went from thinking they had four healthy children to knowing they had three with a fatal childhood disease.”

Looking down at bracelets he wears on his wrists, each inscribed with names of children with Niemann-Pick Type C disease, Crawford, a father of two girls, said he can’t imagine how he would have felt if he had received such devastating news.

“You would imagine they would have been hating the world and cursing God, but they went back home to Tucson and began to work on finding a cure,” he said. “This is a point of how one family turned personal tragedy into hope for families that need help because no one is fighting for them.”

Using a support company that schedules the rides, makes hotel reservations and provides a van that is covered in good-luck signatures, Crawford makes his way across the country meeting with Notre Dame alumni and asking for support.

In Ventura, he met with a contingent headed up by Jim White, president of the local Notre Dame alumni chapter, and they held a fundraiser at Winchester’s Grill and Saloon on Tuesday night.

Winchester’s owner “J.R. Ford donated 20 percent of the proceeds last night, and he’s not even a Notre Dame person, although he said we have a common enemy, USC,” Crawford said Wednesday.

White said he has been impressed by Crawford’s writing. He has written and published “The Education of a Notre Dame Science Dean: My Four-Year Ride with the Irish,” through Corby Books.

“He’s just going cross-country biking. Meeting so many different types of people and stopping at different Notre Dame clubs and meeting with parents of kids with the disease,” White said. “It makes you want to cry because of what he’s doing raising money for little children.”

Jim White (left) and Peter Doran from Destination Cycling ride alongside Crawford as they begin a warm-up ride for Crawford from Ventura to Malibu on Wednesday.

On Wednesday morning, Crawford headed out to Malibu with White; Dave Raulin, of Ventura, who owns Play It Again Sports; and John Campau, of Jackson, Michigan, who flew to California for the ride.

Peter Doran, of Destination Cycling, the support team for Crawford’s cross-country ride, also was riding.

After Malibu, Crawford said he was planning to meet other Notre Dame alumni in the Los Angeles area to raise more money. He said his fundraising goal is $500,000.

“We’re very excited,” Crawford said. Scientist Paul Helquist from Notre Dame has been successful in the laboratory with a medication that affects the cell structure in Niemann-Pick Type C. “The money would go to clinical trials.”

Reprinted with permission from Ventura County Star
Copyright 2013

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