Couple fight disease that killed 2 of their kids

Jane Erikson
Arizona Daily Star
May. 30, 2005 12:00 AM
TUCSON – When Cindy and Mike Parseghian started a foundation to fight the rare disease that has killed two of their children, a fund-raising expert told them they might be able to raise $1 million.

That was 10 years – and $22 million – ago.

“What they have done is extraordinary,” said Tucson resident Barbara Levy, a nationally recognized fund-raising consultant – not the one who made the prediction, although she might have agreed
“It never ceases to amaze me how people continue to support this,” said Cindy Parseghian. “We’re now bringing in about $2.2 million a year.”

Donations have come from “a few very generous individual donors” and others who donate what they can, said the foundation’s executive director, Glen Shepherd. Some of the most faithful contributors have been the Parseghian children’s classmates, who raised thousands of dollars in pennies, gifts that other donors matched to raise close to $80,000.

But it is not just dollars for which Cindy and Mike are grateful. It is the support of family and friends that has enabled them to keep going after the devastating deaths of their son Michael, four days before his 10th birthday in March 1997, and daughter Christa, six months after her 10th birthday, in October 2001. Both succumbed to a disease called Niemann-Pick Type C, a neurodegenerative condition with features in common with Alzheimer’s, heart disease and stroke.

Their first daughter, Marcia, now 16 1/2, is still fighting the disease but is fed through a tube, cannot control her eye movement and can no longer speak. Still, Marcia is blessed with loyal friends who took her to Catalina Foothills High School’s winter formal.

Only their firstborn, Ara, 21, a junior at Princeton, was spared the gene that the parents unknowingly passed on to their other children.

“Do you want my foundation hat or my mom hat?” Cindy Parseghian replied when asked about the success of the Ara Parseghian Medical Research Foundation, named for Mike Parseghian’s father, the famed Notre Dame football coach.

“A husband-and-wife team who are top-notch researchers on Alzheimer’s came to our scientific meeting last year,” she said. “They were blown away – first by the connection to Alzheimer’s, and second by the quality of our researchers and our research. They were amazed at what we’ve accomplished in 10 years.”

Mike Parseghian, a Tucson orthopedic surgeon, said life has been a continuous roller coaster since Michael, Christa and Marcia were diagnosed in August and September 1994.

“Some days you don’t feel like getting out of bed,” he said recently. “But one of us always seems to have enough energy to get the other one going.”

Niemann-Pick Type C – NP-C, scientists call it – is a disease in which the body’s cells are unable to properly metabolize cholesterol. Its effects include brain damage, specifically, neurologic plaques and tangles similar to those caused by Alzheimer’s. Cells become clogged with cholesterol, but common cholesterol-lowering drugs are of no help.

NP-C is so rare it is known to affect about 300 U.S. children of about 500 worldwide, most of whom die within 10 years of diagnosis. But because of its Alzheimer’s resemblance, unknown until about seven years ago, as well as its connection to heart disease and stroke, research labs and pharmaceutical firms are more interested now than when the Parseghians first learned about the disease.

When the Parseghian children were diagnosed, only two labs in the country – at the National Institutes of Health in Washington, D.C., and Tufts University in Boston – were working on NP-C. Now there are 50 labs at work on the disease worldwide, 19 of them funded by the foundation, including a University of Arizona research team that the foundation has funded for a decade. In many cases, foundation grants have served as seed money, enabling researchers to get larger federal research grants.