Affects one out of every 150,000 children.
Known as “childhood Alzheimer’s” by the National Institutes of Health for its deterioration of brain functions.
Causes cholesterol to accumulate in the liver and spleen, causing the organs to fail.
Is fatal and no known cure exists.
SOURCE: University of Notre Dame and the Ara Parseghian Medical Research Foundation
Famed Notre Dame football coach Ara Parseghian and family have joined forces with some of the riding Irish.
The University of Notre Dame’s College of Science Dean Greg Crawford is making his fourth trek across America on a bicycle, trying to raise money for a cause close to Parseghian’s heart — the rare Niemann-Pick Type C disease, a fatal disorder causing cholesterol buildup in the liver and spleen that affects one in 150,000 children.
Crawford made a stop in Mount Pleasant Friday, along with some Notre Dame faithful, and planned to continue to Myrtle Beach after a RiverDogs game Friday night.
“We’re very excited,” Crawford said. “The goal is 5,000 miles to fund a cohort of clinical trials.”
With only 300 to 1,000 people diagnosed with the disease, the community for the disease is tightly knit and connected.
Parseghian, who coached the Fighting Irish football team from 1964-74, lost three grandchildren to the disease — Michael, Marcia and Christa — and started the Ara Parseghian Medical Research Foundation in 1994.
“They’re such an inspiration for so many other families,” Crawford said.
Since 1994, Parseghian’s foundation, started alongside the coach’s son Mike and daughter-in-law Cindy, has raised $33 million for rare disease research. In the past four years, the Road to Discovery and Crawford have raised nearly $100,000 per summer, with a goal to reach $400,000 by the end of this summer.
This year marks Wendy Chioji’s second time riding with Crawford. Chioji, of Park City, Utah, said she’s glad to be working this year toward the goal of clinical trials.
“Clinical trials are really important for me as a cancer survivor,” Chioji said.
Chioji was diagnosed with breast cancer in 2001, fighting it for eight months and undergoing a clinical trial with a new drug. Having survived, Chioji got involved to help others in similar situations.
“It’s all the same fight and just fighting a different demon,” Chioji said.
Crawford’s journey began June 27 in Long Beach, Calif., stretching through 36 cities to end in Baltimore next Friday. Some days, he said, the day is so beautiful that he doesn’t feel the physical strain of going an average of 110 miles per day.
Other days, however, are not so easy going.
“In Arizona, we hit bad timing with that heat wave,” Crawford said. “We had three days over 115 degrees.”
The compassion from fellow Irish alumni around the country pours forth as they see the gold van when Crawford travels through different towns. Charleston in particular, Crawford said, has a large fan base.
“Along the way, we pick up Notre Dame alumni, and they do the legs with me,” Crawford said.
Parseghian’s legacy at Notre Dame has kept him in the Irish faithful’s hearts. On his 90th birthday, the men he had sculpted in his decade at the helm wanted to give something back.
“Over 300 of his former players and their families showed up and presented him with a check for $30,000,” Crawford said.
With hopes for Niemann-Pick Type C disease treatment clinical trials on the horizon, Crawford dreams to give something back to the Parseghians.
“We’d love to get this one for Coach and Cindy and Mike,” Crawford said.
Crawford hopes the journey and his example will encourage his students to follow his trail.
“I really want our scientists to impact human health, the environment, climate change, or something meaningful to them,” he said.
Reach Nick Watson at 937-4810.