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Crossing The Country For A Cure

Greg Crawford dipped the back tire of his road bike in the Pacific Ocean Thursday morning and started pedaling. A little more than a month and 3,675 miles later, he plans to stick the other end in the Atlantic at the end of his fourth cross-country fundraising ride.

Greg Crawford bikes through Utah last year on his annual cross-country ride to raise money for the Parseghian Foundation.

Dipping his tires in the ocean has become a tradition for Crawford, the dean of Notre Dame’s College of Science, who will have logged more than 11,000 miles riding to raise money and awareness for Niemann-Pick disease by the time he reaches the East Coast. Crawford will average roughly 100 miles per day on his trip from Long Beach, Calif., through the southern United States and up to Baltimore.

“it’s kind of exciting,” he said about the tradition of dunking his tires in the ocean. “I like dipping it the end a lot more. The beginning, it seems like a long way to go.”

And Crawford’s cause has gone a long way since he arrived at Notre Dame in 2008. Not long after he came to South Bend, the dean met Cindy Parseghian – former coach Ara Parseghian’s daughter-in-law – at a meeting of the university’s science advisory council. Parseghian told him about her family’s battle with Niemann-Pick disease and the foundation they started to find a cure.

Three of Cindy Parseghian’s four children were diagnosed and eventually succumbed to the rare disorder, which slowly deteriorates the central nervous system. She and her husband, Michael, started the Parseghian Foundation 19 years ago with the help of the former Irish coach. They’ve raised more than $40 million in that time while slowly chipping away at an understanding and cure for the disease.

“When I met with them it was like, ‘OK, what am I going to do and how am I going to contribute?’” Crawford said. “Their story is just so inspiring. You just ask the questions immediately: How do I help?”

A physicist by trade, Crawford couldn’t do much to help in the lab — although some Notre Dame professors have recently helped develop a drug that they hope will help slow the disease’s progression. Instead, he turned to his bike. He said he enjoyed long rides before starting the Niemann-Pick trips four years ago, but never strung together 100-mile days for an entire month before then.

Crawford has had company in the past on his annual ride. His wife joined him during the first two summers. This year, he will be traveling with a support team, but he’ll be the only one on a bike.

“Greg Crawford has been a shot in the arm for us,” Ara Parseghian said. “He’s a bundle of energy and just exactly what we needed. He’s got a lot of energy, a lot of smarts and his help falls right into the research that we need.”

This summer Crawford plans to make stops in 12 different states on his route through the hottest part of the country. He’ll finish the trip in Baltimore days before the start of a national meeting for families that have children with the disease. He pedals during the day and meets with alumni groups, media or Niemann-Pick families most nights. He said the trip is designed to raise both awareness and money for the foundation.

Crawford’s trip raises more than $100,000 annually. This year he set his goal much higher at $500,000. The money, he hopes, will be enough to fund a Food and Drug Administration trial for the drug developed by Notre Dame’s researchers.

Cindy Parseghian said she thinks that this drug might eventually be part of a cocktail of options that can provide a cure. After spending millions of dollars and more than a decade of research to learn how Niemann-Pick works and where the problem is located, she said she thinks researchers around the country are closing in on a breakthrough. The drug developed in part by Notre Dame researchers is one of three in or approaching the trial period.

“We’ve got some therapies that I think have a great effect of slowing down the disease process and giving all of these children more normal lives,” she said. “I think we have three really strong candidates for ingredients [to the cure].”

Their optimism helps provide Crawford with a bit of inspiration on the road. He said he also gets pushed by the many Notre Dame fans he meets during his trip (“The number of Fighting Irish tattoos, I can’t even tell you how many I’ve had people show me,” he said.) and occasionally gets a little help from Coach Parseghian.

“He thought I was crazy for riding through the desert in the middle of summer, but he’s great,” said Crawford, who grew up watching Parseghian’s championship teams on television at his home in Cleveland.

“When I see him at conferences he comes in and talks to these scientists like he’s still a football coach. He keeps me motivated for sure.”

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