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Biker rides to raise awareness

The bands adorn his wrists.
There are six, seven, eight, nine, maybe 12. Greg Crawford quickly counts as he rests on a couch in the lobby of Best Western in Point South.
There are blue, green and maroon wristbands from children, including Dillon and Tyler and there's the one made of horse hair, given to him by Amanda, a 22-year-old California girl who is fighting Niemann-Pick Type C (NPC), a rare, fatal disease that affects about 300 kids and young adults.
Crawford, 48, the dean of the College of Science at University of Notre Dame, has biked throughout the country this summer, from Long Beach, Calif., on June 27, to his eventual last stop this Friday in Baltimore, Md., in hopes of raising money and awareness for NPC.
The 3,476-mile trip took him to Ridgeland last Thursday. It was the end of Day 28 of his journey. His next stop was Charleston.
The wristbands are a constant reminder.
"I tell the kids I'm never taking them off until we get a cure," said Crawford, who was clad in eye glasses, a blue Notre Dame cap and gray T-shirt.
Crawford, who grew up in Ohio, has been an avid bicyclist since high school and decided in 2010 to take to the road to support research for NPC.
Former Notre Dame football coach Ara Parseghian's family was affected by the disease as three of his grandchildren died from NPC.
Guided by Destination Cycle, a company that organizes Crawford's routes, Crawford biked 140 miles last Thursday from Sandersville, Ga., to Ridgeland. He averages about 110 miles a day and has braved the heat and rain. It was 116 degrees in Yuma, Az., and 120 degrees in El Centro, Calif.
"You have to fight through it," he said.
Throughout his time at Notre Dame Crawford's met with the families of the children who suffer from the disease and along this trip he's met a few more, including Amanda and 16-year-old Jessica.
Typically, Crawford said, the child is born healthy, but the body can't properly process cholesterol. It takes about five years for a proper diagnosis, he said.
Jessica has a big smile, but is in a wheelchair and can't walk. Amanda had late-onset NPC. She was first diagnosed with schizophrenia.
Despite the known outcome, Crawford said the children and families remain upbeat. Many started their own foundations, including "Dylan's Army."
There are fundraising rodeos, golf outings and fishing tournaments.
"The amazing thing is they're full of hope," said Crawford, who has a wife and 14- and 18-year-old daughters. "They don't blame anybody."
There is some potential hope. Crawford said Notre Dame professor Paul Helquist, a chemist, discovered a drug compound that works on Niemann-Pick cells.
All money raised by Crawford will go toward clinical trials.
He's raised about $400,000, with a goal of $500,000.
Crawford is guided by a van that is covered in signatures and well-wishes. From the sides to the back to the hood, the van is filled with encouragement. He estimates there are more than 400 signatures.
Crawford said he's enjoyed visiting the country's small towns and has been well-received in the South.
"Once we got to Louisiana, Mississippi, Alabama, Georgia and South Carolina, people have been super interested," said Crawford, who typically begins riding at 4 a.m. "People have been coming up to us, whether it's beeping horns or showing me their Notre Dame tattoos."
Crawford believes his ride is making an impact.
"Sometimes people think scientists are in the lab doing things that make no difference in the world, but it's such a big part of our mission," he said. "We want our science to have an impact."
The trip is set to end in Baltimore, site of the National Niemann-Pick Disease Foundation Conference. There Crawford will meet many of the children and families he's been riding for.
He believes in the cause and plans to continue to raise awareness and hope.
"The families and kids are so inspirational, you can't but want to work with them," Crawford said.

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