One man pedals to raise awareness for disease affecting children

By: Melina Matthes

Imagine biking from Massachusetts to California. One man is actively pedaling to raise awareness for a devastating disease that strikes children.

Greg Crawford is taking a road to discovery. From coast to coast, he's biking 3,250 miles, this particular stop? York, Nebraska. It's his third cross-country ride and each mile, he's fighting for a cause.

An estimated one in 150,000 people are affected with Niemann Pick Type C or, NPC. It's a genetic neurodegenerative disease that prevents the body from effectively processing cholesterol. THat in turn causes the body's organs to enlarge. It primarily affects children before or during adolescence.

“The disease is about 5-600 kids in the U. S. that have it, so it's not very well known and it's very difficult for pharmaceutical companies to pick something like this up,” said Crawford.

While significant progress has been made toward treatment, they still haven't been able to beat it. “We understand the genetics, but we still don't have a cure for the disease. So kids who typically have this, live to be about 12-13 years old and the end of life usually means a wheel chair and a feeding tube,” Crawford said.

So with each mile he passes, he hopes to increase awareness and asks that if you see him on the road you'll join in the fight against NPC by signing his van.

“You can see all the way starting in Boston, all the way no to York, Nebraska. We have signatures from about 300 people so far and I anticipate we'll have even more by the time we hit Pebble Beach.”