Higher Stakes: Parseghian still battling

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Ara Parseghian knows heartache.

There was that time in 1957, just his second year as coach of the Northwestern football team, where his guys went 0-9 on the season and ranked 110th in points scored, and 111th in points allowed, of 112 teams.

There was the time in 1963, where he took his team to within one minute, 33 seconds of winning a national title. And the time in 1969, when his Notre Dame squad lost 21-17 to Texas; and the time in 1972 when the Irish lost – were crushed, really – by Johnny Rodgers and the rest of the Nebraska Cornhuskers, 40-6, in the Orange Bowl.

And then there was the time – all three of them – that he saw a grandchild die after a struggle against Niemann-Pick Type C, a genetic, neurodegenerative disorder which causes progressive deterioration of the nervous system. It usually affects children by interfering with their ability to metabolize cholesterol. Large amounts of cholesterol accumulate within the liver, spleen, and brain. This metabolic disorder leads to a series of neurological problems that are ultimately fatal.

But Parseghian, inducted into the College Football Hall of Fame in 1980, has always had a knack for bouncing back. The year after his Northwestern team didn’t win a game, it finished 5-4 and climbed as high as No. 4 in the AP Poll. After the Cotton Bowl loss to Texas, the Irish finished 10-1, were ranked No 1 for a portion of the season, and won the Cotton Bowl. And after the Orange Bowl loss, the Irish ran the table, finished 11-0 and defeated Alabama 24-23 in the Sugar Bowl to win the National Championship.

So it should surprise no one that in the wake of personal tragedy – tragedies much more magnified than losing a football game – Parseghian has again rebounded and is trying to lead the charge to the top.

The Ara Parseghian Medical Research Foundation is a non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease.

The Foundation began in 1994, shortly after Ara, his son Mike and Mike’s wife Cindy, saw their three youngest children diagnosed with NP-C. Michael Parseghian lost his battle with NP-C in 1997 at the age of nine and Christa passed away at age 10 in October 2001. Marcia passed away on August 6, 2005 at the age of 16.

In an effort to find a cure for this insidious disease, the Medical Research Foundation has been running at full throttle ever since, and is backed by an army of volunteers.

The Foundation’s website states:

“The Parseghian Foundation’s operations are made possible through the efforts of a dedicated army of volunteers. This includes a group of respected and accomplished biomedical scientists and clinicians who serve as members of the Foundation’s Scientific Advisory Board (SAB).

“The SAB has worked diligently to recruit top scientists into the field, to help formulate the direction of Foundation-sponsored research, and to evaluate grant proposals solicited by the Foundation….

“Of the more than 400 rare disease organizations in America, the Parseghian Foundation is a leader in raising funds totaling $33 million in fourteen years. Administrative cost are held to a minimum due to the remarkable support of their Tucson Volunteers, as well as many others across the country who have stepped forward to help including many other NP-C families as well as Notre Dame alumni.

“Each year the Foundation raises approximately $2.3 million through fund-raising events, personal and corporate contributions. Nearly 88 percent of all funds raised go to research helping not only those suffering from NP-C, but from other cholesterol-related diseases such as stroke and heart disease, as well as Alzheimer’s. The link between NP-C and Alzheimer’s is becoming more and more apparent each day.”

“Thankfully, we’ve come a long way since the children were first diagnosed and we launched the Ara Parseghian Medical Research Foundation in late 1994,” Parseghian says on the site. “Scientists funded by the Parseghian Foundation identified the gene responsible for causing NP-C1 in 1997. This discovery has played a major role in helping researchers take Niemann-Pick research to a new level.

“We have funded more than 60 labs around the world and we are moving the ball down the field toward the goal line…a treatment for NP-C is our goal…A Goal For Life.”

The goals of the Foundation are pretty straightforward: To expedite a treatment for NP-C disease; to promote collaborative research efforts among the world’s leading experts in cholesterol metabolism, cell biology, neurobiology, genetics, pharmacology and other areas of science; and to study similar and further the cause of other neurodegenerative diseases as well as cholesterol storage disorders

So far, the progress made by the Foundation is promising.

“We have a number of potential candidates in the ‘pipeline’ and feel that it will be a combination of therapies that will eventually slow or stop the progress of the disease,” says Parseghian via the website. “Of course, our hope and prayer is that this combination of therapies may actually repair some of the damaged cells…so the children will actually get better.”

Parseghian’s last coaching appearance came in 1976, with the College All-Stars against the defending Super Bowl champion Pittsburgh Steelers on July 24, 1976 at Chicago’s Soldier Field. The game was halted in the second half when a torrential thunderstorm broke out and play was never resumed. It was the last such game ever played.

His career coaching record is 170-58-6. He was inducted into the College Football Hall of Fame in 1980, the Indiana Football Hall of Fame in 1984, the Cotton Bowl Classic Hall of Fame in 2007, and was named an honorary Notre Dame alumnus in 1974. He is also a member of the Miami University Athletic Hall of Fame.

But if he has any say about it, his greatest – and most lasting – influence will be felt far beyond the gridiron, as he won’t rest until a cure is found.

“As I review our accomplishments over the past 14 years, I am overwhelmed with pride and gratitude,” he says. “I am proud to have witnessed the establishment of an extraordinary organization of researchers, board members and volunteers who tirelessly exhibit an unparalleled level of commitment to curing a devastating disease.

“Most of all, I am inspired by the pure goodness of the human spirit, which has touched our family over and over through innumerable cards, letters, prayers and donations.

“Our hearts are broken. The pain of losing our three youngest grandchildren is almost unbearable. I think of other grandparents whose grandchild has recently been diagnosed with NP-C. We will keep up the fight for them and all families afflicted with this terrible disease.”

For more information on the Ara Parseghian Medical Research Foundation, please go online to http://www.parseghian.org/

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