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NOTRE DAME GREATS —
Former Notre Dame football coach Ara Parseghian
poses
with four former players who participated in
the fourth annual golf outing and dinner July
27 benefiting the Ara Parseghian Medical Research
Foundation. Pictured are Kevin Nosbusch of Mequon,
left, Eric Penick of Dallas, Ted Burgmeier of
Dubuque, Iowa, and Mike McCoy of Atlanta. (Catholic
Herald photo by Sam Lucero)
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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.
For
more information about Niemann-Pick Disease Type
C, or to contribute to the Foundation, visit the Web
site www.parseghian.org. |
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 that
although 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.
“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.”
