Searching for a Cure
The rare disease has crippled two of their children and taken the life of another, but Cindy (KGSM81) and Mike (M81) Parseghian have refused to give up.
Their second son, Michael, lost his fight with Niemann-Pick Type C disease in March 1997, four days before his 10th birthday. The disease has also forced 12-year-old Marcia and 10-year-old Christa to use wheelchairs. Both struggle to talk, swallow and move their eyes up and down. When they laugh too hard, their bodies become as limp as rag dolls. Only 17-year-old Ara, named after his grandfather, the well-known former football coach at Northwestern and Notre Dame, does not have the disease.
"After we found out the diagnosis six years ago, we screamed and yelled and cried for about three to four weeks," Cindy Parseghian says. "We then said, 'This isn't going to help our children.'"
Thus marked the beginning of the Ara Parseghian Medical Research Foundation in spring 1995. It now raises more than $2 million a year to sponsor research on NP-C. "We started at ground zero with no money, and now we've raised more than $15 million," says Coach Parseghian, the foundation's board chair.
A genetic disease, Niemann-Pick Type C prevents the body from metabolizing cholesterol, which leads to damage of the liver, spleen, brain and nervous system. Children with the disease often have jaundice at birth and later suffer symptoms similar to Alzheimer's disease. They usually die before adulthood.
"It's been very difficult to go through all this on a daily basis. We're doing everything we possibly can," the coach says. "We're hoping for a magic bullet."
After falling in love as Notre Dame undergraduates, Cindy and Mike Parseghian pursued professional degrees at Northwestern, where in medical school Mike met Mike Parmacek (M81, GM87), who would later direct the foundation's scientific advisory board.
The Parseghians, who live in the Tucson area, are quick to credit Northwestern: Mike's medical connections (he's an orthopaedic surgeon), Cindy's business background and the fame of the children's grandfather helped ensure the foundation's success. "Northwestern played a critical role," says Cindy, who is volunteer president of the organization.
At this point scientists have isolated the gene that causes NP-C and are in the process of understanding the disease's cell biology. Their research has also enhanced studies of Alzheimer's disease and more common cholesterol-related conditions, including heart disease.
"Each day we have a clearer understanding of the disease process, which leads us closer to finding a treatment and cure," Cindy says.
Clinical drug tests are being conducted with the experimental drug OGT 918, which has been proven to slow the progress of a disease similar to NP-C called Gaucher disease. But even if a cure doesn't come in time to save their own children, the Parseghians won't abandon the fight.
"I firmly believe we'll find a cure if we continue," Cindy says. "I understand that we could lose the girls any day, but I don't see us giving up even if we lose our children."
Jennifer Su (J03)