Road to Discovery, Dean Greg Crawford's Blog

We had the pleasure of meeting Greg Crawford, the Dean of Science at Notre Dame.  He is an awesome man doing a great thing for the NNPDF community.  For the last two years he has biked all over America to raise awareness for NPC and this year he is biking from Boston, MA to Pebble Beach, CA.  He left May 21 and plans on arriving in Pebble Beach June 22....amazing huh?  He will be arriving in time for the Ara Parseghian, a form ND football coach who lost three grandchildren from this disease, golf tournament to raise money for NPC.

He has been blogging about his journey and I thought some of you might what to take a look!!

 ROAD TO DISCOVERY

Day 9: Holiday City, OH, to Notre Dame! 

Today was a terrific day for riding and reaching home for a visit. Peter, a math professor from Notre Dame, and Tom, a friend from Knollwood Country Club, joined us on the sunny, breezy ride from northwestern Ohio.

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The Ride 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)

Researchers compare notes on deadly nerve disease

Researchers from all over the world are meeting on Notre Dame's campus this week. The group is discussing developments in the research of Niemann-Pick Type C disease.

NPC is a genetic disorder that causes your nervous system to deteriorate, which eventually affects your ability to move, speak, and process information. FOX28 News sat down with some of those scientists to discuss the research they're doing and the progress they've made so far.

Biology Professor Kevin Vaughan says developing a counter to the disease begins with identifying what causes it in the first place. "Without knowing what the problem is, it's hard to design drugs specifically to overcome the problem," explains Vaughan.

Norb Wiech with pharmaceutical company Lysomics says they are in the preliminary stages with the FDA of testing a drug that may slow the deterioration process. "All these ideas can't come to be meaningful unless get the information or use the information to develop a drug to treat them," says Wiech.

Notre Dame is involved with this research through former coach Ara Parseghian, who lost three of his grandchildren to Niemann-Pick Type C. His family established the Parseghian Medical Research Foundation in 1994 in hopes of finding a cure for the fatal disease.

On Monday Notre Dame Dean Greg Crawford will start a 2200 bike ride from Boston to Dallas to spread awareness. We'll have more from them Friday night at 10.

Road to Discovery

June 06, 2011
By South Bend Tribune Staff Report

SOUTH BEND -- University of Notre Dame science dean Gregory Crawford and his wife, Renate, will embark on a second cross-country bicycle ride to raise money for medical research.

The Crawfords will use the ride to support research seeking treatments and a cure for Niemann-Pick Type C (NPC), a rare and deadly neurodegenerative disease that primarily strikes children.

The couple will depart Monday on "Road to Discovery," a 2,200-mile ride from Boston to Dallas.

The Crawfords last summer biked 2,300 miles from Tucson, Ariz., to Notre Dame to celebrate Notre Dame's strengthened partnership with the Ara Parseghian Medical Research Foundation, a nonprofit organization dedicated to funding medical research projects to find a treatment for NPC and related disorders. Notre Dame's former head football coach Ara Parseghian lost three grandchildren to NPC.

http://www.southbendtribune.com/

Ara Parseghian Interview with NBC Sports

Ara Parseghian lost three beautiful grandchild from Niemann Pick Type C but he wasn't going to let that stop him. After watching the above video you can see that it helps to keep him fighting for all the other kids with Niemann Pick Disease. The Parseghian's have been instrumental in raising funds for Niemann Pick research. Please watch the video and visit the Parseghian's website.