CARSON CITY, NV - Reno twins Cassi and Addi Hempel are fighting an intractable foe. Born with a rare genetic disorder, Nieman-Pick Type C, their bodies are unable to process cholesterol. It is slowly robbing them of function.
"It's tough and its progressive," says their mother Chris. "It's kind of like a childhood Alzheimer's. Children just deteriorate over time."
Tuesday found them on an outing on their special pedal trikes on the capitol grounds in Carson City.
They were there to meet a man wearing cycling gear in the University of Notre Dame colors. He was here to help them.
In his day job, Greg Crawford is the Dean of the College of Science at Notre Dame where people are working on a cure or treatments for Nieman-Pick.
"The biologists and the chemists who study this disease report to me, but I'm a physicist by training. I didn't have any skills whatsoever to be able to do it," says Crawford. "I was kind of jealous I wanted to be part of this thing."
He is taking part by channeling his passion for cycling.
Fighting this disease isn't easy. There are only 5- 600 cases of Nieman-Pick in the U-S. Cassie and Addie are the only children in Nevada with the disease. Funding for research tends to go for less rare diseases.
And so for the third year, Crawford has set out on a long distance ride to raise awareness and money for research. This year's tour is the most ambitious yet, coast to coast, 3,200 miles from Boston to Pebble Beach, a finish line he hopes to cross by Friday.
Stops like thTuesday's in Carson City give him the chance to talk about the cause, but also meet families like the Hempels. Each seems to draw strength from the other.
"It's inspirational to our family and we hope that we can provide a little bit of inspiration back to him and his team," says Chris Hempel
"To meet Addi and Cassi it was just an inspiration," says Crawford with an eye toward the Sierra anticipating the long climb ahead of him.
"Those two twins it will get us up and over and down to Sacramento and on to Pebble Beach by Friday and that will be the end of the ride."
But not the end of the mission to find a cure or treatment.
"We are hopeful," says Chris Hempel. "We always have to have hope."
You can follow Crawford's trip and learn more about the cause on his blog http://blogs.nd.edu/gregcrawford/