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On May 27, Gregory P. Crawford, William K. Warren Dean of the College of Science and professor of physics at the University of Notre Dame, will embark on a cross-country bicycle ride to raise awareness and funds for research for rare disease research at Notre Dame’s Boler-Parseghian Center for Rare and Neglected Diseases.

As his fifth cross-country ride, this year’s Road to Discovery will take Greg on a 3,500 mile journey from Long Island, New York to Pebble Beach, California with stops to visit Notre Dame alumni clubs along the way. Notre Dame alumni, friends of the University, ride supporters, and anyone interested in learning more about rare disease research are invited to attend the public alumni club events along the ride. Details for each event can be found with the full ride schedule. Greg will arrive at Pebble Beach on June 26 in time for the annual Parseghian Classic golf outing that raises funds for Niemann-Pick Type C Disease research.

NPC is a rare and deadly cholesterol storage disorder that leads to neurodegenerative issues that are always fatal. NPC primarily strikes children before or during adolescence. Although there is no cure, research has progressed significantly over the years to better understand the disease and identify possible treatments.

With previous research funding from the Ara Parseghian Medical Research Foundation and the Charles Edison Fund, a group of Notre Dame researchers and their collaborators were able to identify medications that have shown promising results in treating NPC disease cells in the laboratory. The treatment is currently clinical trials at the National Institutes of Health, which are being supported by the money raise during the 2013 Road to Discovery.

Since 2010, Greg has successfully completed four bike rides to raise money for NPC research, traveled over 11,200 miles, attended over 60 Notre Dame alumni club events, and raised $1 million in total for NPC research.

Expanding Greg’s fundraising efforts, this year’s Road to Discovery will raise awareness and research funds for other rare diseases, including those that affect young children, such as Nonketonic Hyperglycinemia (NKH) and NGLY1 Deficiency. NKH is a condition that prohibits the body from properly breaking down the amino acid glycine, which can lead to developmental issues, seizures and brain damage. NGLY1 Deficiency is a disorder that causes the accumulation of glycoproteins in the body, which can result in developmental delays, abnormal tear production, and liver disease.

The goal of this year’s ride is to raise $1 million for rare disease research at the University of Notre Dame.

Keep up-to-date on Greg’s progress across America right here on his daily blog. If you meet Greg and the Road to Discovery team along the way, please share your photos on your favorite social media sites using #RoadToDiscovery.

Go Irish!

Ride Gear

Interested in sporting your own Road to Discovery gear? Purchase a ride jersey and shorts.

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Riding jersey

 



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