College of Science Dean Gregory Crawford wears his summer souvenirs around his wrist.
Red and green rubber bracelets, which read "Dillon's Army" and "Race for Adam," remind Gregory of the children living with Niemann-Pick Type C (NPC) disease he and his wife Renate met on their 2,200 mile "Road to Discovery" bike ride this summer.
"We did something different this year [from last year's "Desert to Dome" bike ride]," Gregory said. "This year, we wanted to actually focus on the disease and the families and the children it affects."
Last year, the dean and his wife biked nearly 2,300 miles from Arizona to South Bend to raise awareness for NPC research. This summer, the couple's second journey for the disease began in Boston June 13 and ended in Dallas July 11.
A van and two drivers, as well as one of the Crawford daughters, accompanied the couple on their trip. Individuals, families and friends signed the van at the stops along the way and phrases from these well-wishers, including singer-songwriter Amy Grant, energized the Crawfords on their trip.
"We even met parents who had lost children to this disease," Renate said, pointing to a message on the van. "Rhonda from Providence lost her son to the disease, and she wrote, ‘They only have a childhood to live a lifetime.'"
Another message scrawled on the side of the car read, "2,200 miles can make a world of difference."
Gregory said he and his wife will make a documentary about their trip.
"We met with families along the way," Gregory said. "Every day after riding, we had events [and] meetings with alumni clubs, researchers and families."
The couple began in Boston with AraParseghian, whose namesake and grandfather is the former Irish football coach. Parseghian, a fourth-year medical student at Tufts School of Medicine, watched his three siblings die of NPC, a neuro-degenerative disease that inhibits the body's ability to process cholesterol. He now serves on the National Board of Directors for the AraParseghian Medical Research Foundation, which funds research to find a cure for NPC.
A photograph of the late Parseghian children – Michael, Marcia and Christa – hangs in Gregory's office.
While the journey was emotionally and physically difficult, Renate said the trip was also rewarding.
"Every day, your mind is completely filled with the thoughts of the children you met the night before," she said. "The trip was more rewarding because it's personal. I never felt sore or tired while riding because of the thoughts of the families. They were so appreciative."
The journey ended in Dallas at the University of Texas Southwestern Medical School, where two Nobel Laureates conduct NPC research.
The cost of NPC is higher than many people realize, Gregory said. Many of the drugs used to ease symptoms are "off-label," meaning insurance companies will not pay for the treatments.
All funds raised through their journey are dedicated to research at Notre Dame to find a cure for NPC.
"NPC is a disease that doesn't have a cure or therapy," Gregory said. "Part of Notre Dame's mission, part of its character, is to pick challenges like this up."
