A University of Notre Dame dean is pedaling across the country to raise money and awareness for a rare and deadly childhood disease. He made a stop in Myrtle Beach Sunday.
Dean Gregory Crawford has spent the last month riding his bike across the country in an effort to raise money and awareness for Niemann Pick Type C, or NPC, a deadly neurodegenerative disease that primarily strikes children.
The disease also took the life of one of his colleague's grandchildren.
"Every month the kids suffer," Crawford explained, "it's a really tough disease, it's a really difficult end of life with a feeding tube, they don't walk or talk anymore and so it's really something that we really want to find a cure for."
In the past four weeks, Crawford's ridden over some of the country's steepest mountains and endured extreme temperatures.
Crawford said there were days he experienced extreme heat. One day he said temperatures reached 120 degrees. "So getting on the bike was one thing but actually continuing and sustaining that was very difficult," Crawford said.
But when Crawford needed inspiration the most, he said all he needed to do was take a walk around his support van.
"I saw all the signatures of Amanda who we met in california as a young lady with Niemann-Pick and then we met Jessica who signed on the back, another girl with Niemann-Pick" said Crawford. "Those signatures actually meant a lot to me in terms of get back on your bike and get this thing done," Crawford explained.
Crawford's got a week left in his journey, one that's already raised more than $400,000 towards clinical trials for NPC. He says the journey's inspired others too.
"They come up to you and ask you what are you doing and you get to tell them this story that's although very tragic in terms of a childhood disease that's fatal, it's very inspirational and gives so many people hope" said Crawford.
Crawford is making his last stop next week in Baltimore at the National Niemann-Pick conference, where families with children suffering from this disease are meeting.
Crawford is hoping to raise $500,000 by the time he reaches Baltimore. To help check out Crawford's website.