Greg Crawford knows that the distinction of a “rare disease” is a bit of a misnomer. As dean of the College of Science, Crawford spends his time during the school year to research fatal conditions such as Niemann-Pick Type C (NPC) disease, a rare genetic cholestoral-storage disorder that primarily strikes children before or during adolescence and is always fatal.
During the summer, Crawford takes to the road, traveling the country on his bicycle to spread awareness and raise money for more research. It became a yearly tradition after he completed his first 3,500 ride back in 2010. In his first four years, Crawford said that he has been able to raise a total of $1 million, but he has his hopes set much higher for this years trek.
“The goal for this year is to raise $1 million on this ride alone, which would equal all my previous rides combined,” he said.
Crawford began this years journey in Long Island, N. Y. on May 26. Since then he has been making his way west, with a final destination of Pebble Beach, Calif. Crawford made his way through White Pine County on Sunday, making a brief stop in Ely to try and recover from the summer heat.
“This leg of the trip through Nevada has been the most difficult of any part of a ride in my five years doing this,” Crawford said. He cited the high winds that gusted through town over the weekend as the main contributor to his difficulties.
But for the college dean, the ride and the sights across America are only a side dish to a much larger meal. Since he is followed by a Notre Dame labeled van on his journey, Crawford said that many people will often stop him and ask about what Notre Dame is doing in this part of the country. Those interactions, at the “pit stops, the bathroom breaks and on the side of the road” are his chance to spread awareness about the type of research him and his team are doing at the college. As it turns out, he always seems to run into at least a few people who have come across a rare disease, or know someone who has.
“What people don’t realize is that there are more than 8,000 different rare diseases. Anyone one in particular might only affect a small portion of people but when looked at collectively, one in 10 people in the United States has a rare disease,” he said.
Along his ride, Crawford has stopped and attended multiple fundraising events put on by the Notre Dame alumni clubs and their communities. As of Monday morning, just four days shy of finishing his trip, Crawford said that he had raised over $800,000. His final fundraiser, a golf tournament put on by Notre Dame’s College of Science and the Ara Parseghian Medical Research Foundation is expected to get him the rest of the way to his $1 million goal. According to press materials sent by Notre Dame, the money will go directly to funding research for NPC, as well as two other rare diseases that affect young children, Nonketonic Hyperglycinemia which can lead to developmental damages and brain damage and NGLY1 Deficiency, a disorder that can result in abnormal tear production and liver disease.
This year’s trip has been given the title of “Road to Discovery” and when it is completed it will mark close to 15,000 total miles ridden by Crawford since its inception. For more information on the “Road to Discovery,” visit www.roadtodiscovery.nd.edu. To learn more about the NPC research that is being done by the College of Science, visit www.niemannpick.nd.edu.