Road to Discovery Rolls Through IC
IOWA CITY, IA (CBS2/FOX28) - With the 43rd RAGBRAI just more than a month away, Iowans are no stranger to long bike rides. One man is blowing this summer's nearly 500 mile route out of the water with his cross-country trip, all for a good cause.
College football has some of the most powerful athletes challenging each other every week. But this summer, it's college football not at Iowa, but Notre Dame, that's helping small children who will never be quite that strong.
"The disease that we're riding the bikes for today is called Neimann-Pick Type C," said Dr. Gregory Crawford.
Most people have never heard of it before. Only about 500 to 1,000 kids in the United States have it.
"It's a horrific disease because by the time you're in your early teens, you're in a wheelchair, feeding tube and breathing apparatus, so you generally don't make it to your 20's," said Dr. Crawford.
That was the reality over and over again for a member of the Notre Dame Football family.
"Our famous coach, Ara Parseghian, won two National Championships in the 60's and 70's, lost three of his four grandchildren to Neimann-Pick Type C.
With that for inspiration, a gold helmet just like the Fighting Irish wear and a truck full of well-wishes, Dr. Crawford is out raising money for research so rare the federal government can't justify the cost and private companies can't break even.
"When the Parseghian kids were diagnosed with it two decades ago, it was a paragraph in a medical school textbook," said Dr. Crawford.
Now, the foundation has raised $40 Million, sponsoring research around the world and at Notre Dame.
"One of our drugs from one of our professors is in clinical trials at the National Institute of Health," said Dr. Crawford.
The path to better treatment and a cure, like a bike ride across the nation, is long. But while Dr. Crawford closes the distance between Iowan and his journey's end in California, it's not the luck of the Irish carrying the mission across the nation.
Dr. Crawford raised a million dollars in his first four years riding. This year, he's looking to match it with another million in just one ride. He says he's just about $200,000 away from meeting that goal.
To donate, click here.
To read about Dr. Crawford's journey, click here.