A Rare Lysosomal Storage Disease

Road To Discovery 2012 – Greg Crawford

Road To Discovery 2012 – Greg Crawford

Gregory Crawford

Gregory Crawford

Dean Greg Crawford is an amazing individual. If you asked if he felt amazing about what he does for the Niemann-Pick Community, he'd possibly beg to differ because of his humble attitude. Over this summer, Greg has ventured on a coast to coast tour to help raise money for Niemann-Pick Type C for research.

A more official intro, Gregory P. Crawford is the dean of the College of Science at the University of Notre Dame. For the third consecutive year, he set out on a remarkable bicycle ride this past summer to support research seeking treatments and a cure for Niemann-Pick Type C (NPC). NPC is a rare and deadly neurodegenerative disease that primarily strikes children before or during adolescence.

A few weeks back, I had the pleasure of speaking with Greg more about his journey and to also share a little bit about our family. Greg felt a calling to get involved but wasn't for sure what he could contribute. Since he was good at biking, he choose that as a means to create awareness and fundraising to achieve a bigger goal.

Here was his rigorous schedule:

Date Arriving

5/21/2012 From Boston, MA to Sturbridge, MA (75 miles)

5/22/2012 Lakeville, CT (100 miles)

5/23/2012 Walton, NY (130 miles)

5/24/2012 Corning, NY (125 miles)

5/25/2012 Salamanca NY (105 miles)

5/26/2012 Meadville, PA (100 miles)

5/27/2012 Elyra, OH (100 miles)

5/28/2012 Bowling Green, OH/Montpelier, OH (100 miles)

5/29/2012 Granger, IN (95 miles)

5/30/2012 Matteson, IL (100 miles)

5/31/2012 Mendota, IL (100 miles)

6/1/2012 Davenport, IA (85 miles)

6/2/2012 Oscaloosa, IA (125 miles)

6/3/2012 Creston, IA (110 miles)

6/4/2012 Bellevue, NE (96 miles)

6/5/2012 York, NE (110 miles)

6/6/2012 Holdredge, NE (120 miles)

6/7/2012 McCook, NE (80 miles)

6/8/2012 Yuma, CO (100 miles)

6/9/2012 Byers, CO/Denver,CO (100 miles)

6/10/2012 Denver, CO – ND Club Tour

6/11/2012 Granby, CO (95 miles)

6/12/2012 Craig, CO (120 miles)

6/13/2012 Rangely, CO (90 miles)

6/14/2012 Altamont, UT (95 miles)

6/15/2012 Park City, UT (90 miles)

6/16/2012 Wendover, NV (160 miles)

6/17/2012 Ely, NV (120 miles)

6/18/2012 Fallon, NV (100 miles)

6/19/2012 South Lake Tahoe, NV (100 miles)

6/20/2012 Elk Grove, CA (100 miles)

6/21/2012 Livermore, CA (100 miles)

6/22/2012 Monterey/Pebble Beach CA (100 miles)

More importantly than Greg's cross country journey to help give back to help fight Niemann-Pick, is Greg's compassion for the situation and the time he took with multiple families. Greg stated he found these three things in common:

  • Passion for their kids
  • Not Angry about the situation and having lots of faith
  • Can never pretend you know what it really is like to have a rare disease like NPC if you're not in that parents shoes.

Here is a picture of some of the inspirational wristbands Greg wears to remind him of what he and others are fighting for. Thank you Greg for taking time to speak with us!

Greg Crawford's Wristbands For NPC

Road To Discovery Booklet 12'.

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