A Conversation with Ara Parseghian, Part 3: Fight of his Life

Ara Parseghian was a controversial choice for head coach at Notre Dame: he didn't go to Notre Dame, he wasn't Catholic and the only time he had been to Notre Dame was as head coach at Northwestern, beating the Irish four straight seasons.

Ara Parseghian became the most successful Notre Dame coach of the modern era, but as Maureen McFadden continues her conversation with Ara, we find out his biggest fight came off the field.

Those of us lucky enough to have been here for the era of
Ara remember the excitement he brought to South Bend at a time when the football program was a mess. And while many regret his decision to step down, he does not.

Little did Ara know that one of the biggest fights of his life was twenty years down the road when three of Ara's grandchildren passed away.

After the Michigan game in 1994, his son Michael and daughter-in-law Cindy told the family that three of their four children - Michael, Christa and Marcia - suffered from a mysterious genetic disease called Niemann-Pick Type C. Only his namesake, Ara, escaped the diagnosis.

Ara, who had never heard of the disease, was frustrated by the lack of information on it.

“I'm going, ‘Niemann-Pick, what's this?’ And I start and I try to research it and so forth and there's a couple of paragraphs at the most in medical books about Niemann-Pick,” he says.

Niemann-Pick causes the nervous system to deteriorate by interfering with a child's ability to metabolize cholesterol.

With little information and no hope for a cure, a man who spent much of his life battling on the gridiron set out with a relentless drive to save his grandchildren.

“15 years ago this month, November of 1994, we formed our foundation and our charge, to begin with, to raise a million dollars in four months,” says Ara.

The Ara Parseghian Medical Research Foundation formed a board directing fundraising and a scientific board directing research for a cure.

“We started out, I figured we got a foundation, we're going to get research, we're going to get a drug and we're going to cure them all,” says Ara.

Sadly, while Ara's foundation was making progress, they lost Michael, Christa and Marcia.

“Two of them passed away at 10 and Marcia, with special attention, survived to 16, but not a very good quality of life,” he says.

In spite of the terrible loss, Ara uses a football analogy to explain how far the foundation has come.

“We wound up with the ball on our own one foot line with the goal 99 and two thirds away when we found out about Niemann-Pick. With our research, our investigative work, we pushed that ball out to the 30, 40 yard line. We're in the four down area now,” says Ara.

With 22 laboratories worldwide looking for a cure, Ara says the ball is now on the other side of the field with drugs in clinical trial.

“We can extend lives. We haven't got the silver bullet yet, but all the things we're still doing are aimed at that,” he says.

He knows his celebrity has helped raise the tens of millions of dollars at work, and he hopes one day to save every family from what theirs has been through.

Ara would be willing to trade every win and national championship for a different outcome.

“No grandparent or parent should be burying his children. I mean, that has been a traumatic thing for all of us,” he says. “I wouldn't wish this upon anyone. I mean, we are all scarred by this.”

Scarred, but not willing to give up on a cure until the foundation scores the most important touchdown in Ara's life.

“We've got things that look very promising.”

Part of that promise is research involving Alzheimer’s.

Ara says Alzheimer’s cells are similar to Niemann-Pick cells, so there are similarities under study.

If you would like to learn more about Niemann-Pick and Ara's foundation click here.

If you’d like to see Part 1 of “A Conversation with Ara Parseghian”, click here. Ara talks about his childhood and how it lead to his life in South Bend.

To see Part 2, just click here. Ara talks about his years at Notre Dame and how he was able to take a 2-7 team to 9-1 in his first year, using kids who rode the bench under previous coaches.


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