Joy Hampton
Staff Reporter
CLAREMORE —
One day in 1994 the unthinkable happened. Mike and Cindy Parseghian learned three of their four children would die.
Shortly thereafter, Parseghian family members founded the Ara Parseghian Medical Research Foundation.
Anyone who knows football or Notre Dame knows Ara Parseghian, the legendary football coach and the grandfather of the three children doctors discovered were afflicted with Niemann-Pick Type C (NP-C) disease.
NP-C is a genetic, cholesterol storage disorder that primarily strikes children with death occurring before or during adolescence.
“You usually don’t live past 12 or 13,” said Gregory Crawford, dean of the College of Science at Notre Dame.
Only one in 150,000 live births have NP-C. Prior to the founding of the Parseghian Foundation, no one was doing much about this deadly disease.
“It’s classified as a rare disease,” said Crawford. “There’s no economic incentive for pharmaceutical companies to develop curs for rare diseases.”
Rare diseases also don’t usually qualify for government funding. As a group, rare diseases including several rare genetic disorders such as NP-C and rare forms of cancer kill large numbers of people each year and little is known about them because the funding for research to find cures is not available.
Notre Dame is one exception. The university focuses on rare diseases.
“We have a big effort in that area,” said Crawford.
Crawford isn’t just sitting in his office working on the problem, however. He and wife Renate, who recently celebrated her birthday while on the road are cycling for a cure.
The couple decided to cycle over 2,000 miles, starting in Tucson, Ariz. and ending at the Golden Dome in South Bend, Ind., home of Notre Dame in an effort to raise awareness and research dollars for the disease.
They embarked on their journey July 24 from Tucson.
“We really haven’t had a reprieve from the heat,” said Renate Crawford.
Most mornings they start very early, rising at 4 a.m. to get on the road while temperatures are low and traffic is light. While they are touring through cities that have established Notre Dame alumni clubs the couple spend most of their nights in the hotels and motels of small town America, preferring the low traffic volume and quiet atmosphere of small cities like Claremore.
“We try to be done by noon, so however many hours we need, we just work backwards,” said Renate Crawford.
The couple is cycling as many as 90-100 miles a day.
When the going gets tough, the Crawfords look at the picture painted on the side of the yellow support van that is following them across the nation. On that van, the picture of Michael, Marcia, and Christa Parseghian reminds them to keep going, that this is about saving the lives of children.
“This is the reason to do it,” said Renate Crawford. “I would not do this for a vacation.”
Renate said she has been touched by the courage of Cindy Parseghian who has suffered the unimaginable in losing three children. As often is the case with rare genetic disorders, a family can be hit hard.
The Crawfords said Oklahoma has been very welcoming.
The Tulsa Notre Dame alumni hopped on bikes and accompanied them from Kellyville to Claremore.
A large section of the couple’s Oklahoma journey has been along Route 66. The Crawfords blog daily, keeping followers up on their progress.
To view their blog or donate to the cause, visit http://blogs.nd.edu/gregcrawford.
The Ara Parseghian Medical Research Foundation is a non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C disease. For more information on NP-C see http://parseghian.org.
