POSTED: Wednesday, July 17, 2013 - 5:30pm
UPDATED: Tuesday, July 23, 2013 - 8:11pm
BATON ROUGE, LA (NBC33) — A college dean is biking his way across the country to help children with a rare incurable disease, and he stopped in Baton Rouge Wednesday. His name is Gregory Crawford.
"I ride for a very special cause to raise money for Niemann-Pick Type C, and it's a disease that's a fatal childhood disease that takes the lives in this country," Crawford said. "It's a great cause for a small group of kids that somebody has to fight for."
Niemann-Pick Type C is a cholesterol-storage disease that gradually makes a child's body shut down. Crawford makes this 35-day, nearly 3,500-mile trip every year, and he said it's his way of making an impact.
"I wanted to do something since I didn't have any biology or chemistry skills, so this was great way for me to raise money for those who can do research on the cause," Crawford said.
The disease hits close to home for Crawford. He said a beloved friend and colleague lost his grandchildren to Niemann-Pick.
"So this is a picture of three of the four Parseghian kids that had the Niemann-Pick Type C disease, and it was taken a day before Michael was actually diagnosed with the disease," Crawford said. "However, when they went to the doctor to diagnose Michael, they found out the three of their four kids has the fatal childhood disease. Unfortunately, their children have all since past away, but they kept up the fight for all the other families."
Crawford hopes to raise $500,000 on this trip. In Baton Rouge, he is only half-way through the trip, he's already raised $400,000.
"People of Louisiana have been great. They've all been very,very interested in our cause," Crawford said.
If you see him on the road, you could become a part of his journey.
"Anybody that we see that we tell the story to we ask if they'll sign the van for us, and right now we have more than 300 signatures," Crawford said. "It's just a great way to have folks be a part of the ride and to help inspire me to keep going and to help inspire the scientists who are working on the cure to keep going."
Right now, Crawford is riding his bike to a Niemann-Pick conference in Baltimore. This is where families with children suffering from the disease are meeting to continue to find a cure.
If you would like to learn more about the disease or see how you can help out, you can go to roadtodiscovery.nd.edu