By Sam Lucero of the Catholic Herald Staff

MILWAUKEE — Faithful Notre Dame football fans remember Ara Parseghian as the second winningest coach in Fighting Irish history. During his career in South Bend, Ind., from 1964 to 1974, Parseghian won two national championships. The passion he brought to the gridiron is now burning in a cause that is more meaningful and personal to him.

After witnessing two of his grandchildren succumb to a little known genetic disorder called Niemann-Pick Type C Disease, the legendary coach devoted his life to helping son Michael and daughter-in-law Cindy find a cure.

According to a booklet published by the Mayo Clinic, Niemann-Pick Type C Disease (known as NP-C) is an inherited disorder that affects the liver, lungs and brain. The disease involves a number of fat cells, including cholesterol, that cannot be properly processed. As a result, an accumulation of fat builds up in the brain, liver and spleen. It affects children, and death from complications of the disease usually occurs in the teen-age years. About 500 children in the United States suffer from NP-C.

For Michael and Cindy Parseghian, this mysterious disease became a nightmare in 1994, when three of their four children, Michael, 7, Marcia, 6, and Christa, 3, were diagnosed with NP-C. Only their oldest child, Ara, does not have the disease. Michael died March 22, 1997, just four days before his 10th birthday, and Christa died on Oct. 23, 2001, six months after turning 10. Marcia, now 15 years old, continues to battle the disease.

Two months after their children were diagnosed with NP-C, Cindy, who earned a master’s degree in business administration in 1981, established the Ara Parseghian Medical Research Foundation to search for a treatment and cure. With her father-in-law’s familiar name and complete support, and her husband’s background as a medical doctor, Cindy began what has become a model nonprofit medical research foundation. It raises more than $2 million a year and today funds more than 20 research projects studying NP-C.

Much of the Parseghian research foundation funds come from benefits held around the country. With his ties to Notre Dame, it is no surprise Parseghian has seen an outpouring of support from Notre Dame alumni and fans, including friends in Milwaukee.

One of Parseghian’s longtime acquaintances, Tom Mulcahy, a member of St. James Parish in Mequon and president of the Milwaukee chapter of the Notre Dame Alumni Club, contacted the ex-football coach and asked if the Milwaukee club could sponsor a benefit for the Parseghian foundation. For the past four years, the Milwaukee club has held a golf outing at the Mequon Country Club. This year’s benefit took place July 27.

In addition to golf, participants enjoyed cocktails, a silent auction and dinner. They were treated to appearances by Coach Parseghian, and former Fighting Irish players Mike McCoy, Eric Penick, Ted Burgmeier and Kevin Nosbusch.

In an interview before the event, Parseghian said the deaths of the two children has been devastating, the foundation’s work to find a cure for NP-C has given his family the strength to endure their pain.

“We started out, obviously, to find our silver bullet that would save our grandchildren,” he said. “If this hadn’t occurred to our own grandchildren, we’d have never heard of Niemann-Pick Type C.” After his grandchildren were diagnosed with NP-C, the family had two options, Parseghian said. “We could either sit back on our tails and not do anything, or we could help find a cure.”

Parseghian acknowledged that losing two grandchildren to an incurable disease — and watching a third continue to battle it — has taken a toll on the family.

“No grandfather, no father or mother should outlive their grandchildren or children,” he said. “This was devastating to us. There’s no question it’s had a profound effect on all of us. Life is so precious and to have this happen to young people, it’s difficult to cope with it. All of us are scarred by it, no question.”

Parseghian, who is not Catholic, said Michael and Cindy are “very strong Catholics” who have relied on their faith for strength. >P>“What I’ve observed from both Mike and Cindy, they are very loyal to the church. They are regular church goers, and they brought up their children within the Catholic faith,” he said. “This (disease) was a terrible thing. I know it did challenge Cindy in particular, questioning why this should happen to us. I think as time moved on she leaned more and more on her faith.”

Faith in God and faith in medical research keeps them optimistic.

In a somber voice, he added, “We have lost two of our three grandchildren (afflicted by NP-C), and the odds are we’ll lose the third one. Hopefully, future parents and grandparents will be spared the agony this terrible disease brings about. That’s the way we look at this. If we can find a cure to it, it would be a magnificent thing.”

For more information about Niemann-Pick Disease Type C, or to contribute to the Foundation, visit www.parseghian.org

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