Ara Parseghian didn't know how he got talked into this.
But there he sat on Saturday night after the Blue-Gold Game last month, honored atop the Joyce Center in Club Naimoli. A group organized in part by a former player and a former student manager had thrown an early 90th birthday party for a coach reluctant to attend it.
Giving to the Parseghian Foundation
Nearly two decades ago parents Mike and Cindy Parseghian heard the diagnosis that would change their lives. It would rob them of three children. It would also give rise to the second act of Ara Parseghian's career when the legendary Notre Dame football coach put his name behind the organization started by his son and daughter-in-law.
Founded in 1994 following the diagnosis of seven-year old Michael Parseghian with Niemann-Pick Type C, a rare and lethal cholesterol storage disorder in children that causes the deterioration of the nervous system, the Ara Parseghian Medical Research Foundation has since raised more than $40 million.
"At the time, virtually nothing was known about the disease," Cindy said. "It's been an arduous journey."
Studies estimate that nearly 200 children battle Niemann-Pick Type C today. Symptoms can include children losing the ability to walk, talk or move their eyes.
There is no known cure.
Michael died two years after his diagnosis. Two of his sisters were also diagnosed, Christa dying in 2001 at age 10 and Marcia in 2005 at age 16.
To those children Notre Dame's last two-time national championship football coach was simply their grandfather. For the last 20 years, including today on his 90th birthday, Parseghian has been their champion.
The Ara Parseghian Medical Research Foundation operates out of Tucson, Ariz., helping raise money for research grants. That includes for work being done at Notre Dame with Histone Deacetylase Inhibitors (HDAC), a potential cure the foundation hopes goes into advanced testing next year.
"Researchers say how far we've come in the last 19 years," Cindy said. "But as a mother who's lost three children, it's been painfully slow."
A cure remains the goal but that journey became potentially longer with government grant money increasingly scarce. Grants rated in the top 25 percent used to be nearly assured funding. Today, only grants rated in the top six percent can feel confident of fulfillment.
"That throws more on the general public," Cindy said.
The foundation's goal is to raise $1.5 million annually, with the Notre Dame community providing much of that support through charity events, alumni club gatherings and direct donations.
For information on how to give to the Ara Parseghian Medical Research Foundation, click here.
"I can't tell you how appreciative of the Notre Dame community we are," Cindy said. "It's been remarkable, how they've rallied around our family. Financially, emotionally, spiritually, they've been with us this whole journey. I never realized when I went off to Notre Dame that it would have such an impact on the rest of my life."
- Pete Sampson
More than 60 former players showed. Many times more honored Parseghian, some who were only recruited by the coach and never played for him. And in barely a month, they'd raised about $300,000 for the Ara Parseghian Medical Research Foundation to aid its fight to cure Niemann-Pick Type C, the rare disease that took three of the coach's grandchildren.
Parseghian turns 90 today. Almost 40 years removed from his final game at Notre Dame, the Fighting Irish icon has never left the University, nor has the University left him.
That partnership produced two national championships. It could also lead to the cure for a lethal disease as the Notre Dame community continues its support of a coach who revived the program when he arrived in South Bend almost a half-century ago.
His Second Act
Cindy Parseghian pulled her father-in-law out of retirement in 1994 when she started a foundation to battle the disease diagnosed in her son Michael as well as her two daughters Christa and Marcia.
Niemann-Pick Type C didn't have an advocate in the medical community. Affecting barely 200 children annually, it's known in scientific circles as an "orphan" disease, basically ignored by major pharmaceutical companies because research doesn't fit most economic models.
In the former Notre Dame head coach the organization had a face, a name and a community to support it. Since the foundation's beginning, through the deaths of Michael, Christa and Marcia, and today as science closes in on a potential cure, Parseghian has helped raise more than $40 million for research.
"He'll tell you it's the most important work that he's ever done," Cindy said. "People look at his football record, but I think he's proudest of the young men he coached who turned into fine adults. That was his mission, not to win national championships. It was to teach young men how to be successful in life.
"Then we came along. He's been able to provide us with that credibility."
Parseghian put his name on the foundation and his weight behind it. He's spoken out on the needs for research. He's addressed conferences. He's helped fund raising efforts.
The affection for Parseghian from Notre Dame alumni clubs has turned into dollars too. The Denver club has been at the forefront by hosting concerts and golf outings. They're playing a part in this month's campaign built around Parseghian's 90th birthday, asking for donations in increments of $9.
"It's very interesting to see how people react to a need," Cindy said. "I've come to learn people are incredibly generous and caring, they just need to know how to help."
Going The Extra Miles
Next month Greg Crawford will clip into his bike after the second Parseghian Golf Classic at Pebble Beach and start pedaling. He'll finish in Baltimore about a month later.
Not bad for a physics professor and the Dean of Notre Dame's College of Science.
"It's the only thing I can do well anyway," Crawford said. "I'm not really good at anything else."
Last year Crawford rode from Boston to Pebble Beach. The year before he did Boston to Dallas. And the year before that it was South Bend to Tucson, which is where he became connected to the Ara Parseghian Medical Research Foundation not long after coming to Notre Dame in 2008.
At a conference on Niemann-Pick Type C in Tucson, Crawford first listened to Cindy Parseghian talk about the foundation's goals and its story. He walked away knowing he wanted to get involved in the search for a cure, even if his background in physics didn't match with the research field of molecular biology.
"They showed a film of the kids and tears are falling out of everyone's eyes," Crawford said. "There's just no way anybody who listens to that for the first time could not want to be involved in the foundation with that family and that coach."
Crawford's rides have raised about $75,000, funding research, including some on Notre Dame's campus. The science behind a cure for Niemann-Pick Type C remains in process, but there's optimism one could be coming.
The momentum for Notre Dame's push toward a cure began in earnest about eight years ago when Cindy Parseghian presented completed research on the disease to a team of Notre Dame scientists. Under the Golden Dome, she made the case that science understood the blueprint of the disease. It was time to pivot toward a cure.
Notre Dame researchers began attending foundation meetings that next year. Last summer the foundation staged a conference at Notre Dame that attracted scientists from Brazil and Europe. Another conference is planned for this summer.
The former coach spoke to that group last June, offering a flicker of his old profession.
"He comes in, kind of talks like a football coach and at a science conference we love it," Crawford said. "He motivates everybody. He gets people fired up for the cause."
Potential cures for Niemann-Pick Type C have found fledgling successes elsewhere. But the breakthrough may be coming from Notre Dame.
The drug Zavesca has been approved in 47 countries but not the United States. It's shown an ability to slow the effects of the disease, which can rob children of their ability to walk and talk as it disrupts the nervous system. However, it hasn't proven effective in all cases and can be cost prohibitive.
Another drug, Cyclodextrin, is already in early trials through the National Institutes of Health. It could move to an advanced trial phase by the end of the year with testing on potential patients.
Notre Dame's potential cure comes from a class of drugs known as HDAC Inhibitors (Histone Deacetylase Inhibitors), first recognized by scientists at the University. The Parseghian Foundation has already met with the Food and Drug Administration on HDAC and there's belief patient testing could begin by next year.
"Scientists are supposed be very, very critical," said Paul Helquist, Professor and Associate Chair for Research in the Department of Chemistry and Biochemistry at Notre Dame. "They want absolute truth. There's very strong consensus that (HDAC Inhibitors) looks very promising, there's enough data to support that."
If Notre Dame finds the cure it could still take years for approval. However, that represents a major advancement for the foundation that started without a basic understanding of the disease.
"We're at a point now where we can see the goal line," Cindy said.
The Notre Dame community hopes that goal line gets crossed in South Bend.
"We want Notre Dame to be the one that wraps this up, closes the doors on it and we can move on to another rare disease," Crawford said. "I'm going to keep doing this until we get it. I'm committed to it."
'I'll see you back here for my 100th'
The buildup to Parseghian's birthday celebration took Dan Novakov back to the pregame locker room more than 40 years ago. The former Notre Dame center had teamed with former head student manager Jim McGraw to put on the event during the Blue-Gold Game weekend.
Both men pleaded, begged and ultimately convinced Parseghian to do the celebration. Rocky Bleier served as master of ceremonies. Digger Phelps spoke. So did Mike Parseghian. Notre Dame athletics director Jack Swarbrick green lit the University funding the dinner. That let Novakov and McGraw concentrate on fundraising.
"I hope I don't mess this up," Novakov thought. "I hope this performance doesn't disappoint coach."
Novakov and McGraw didn't ask Parseghian to speak at the dinner. They didn't tell him the event would be a fundraiser either. When they presented Parseghian with a check they figured he'd say a few thank yous from his table. Blown away by the contribution, Parseghian made his way on stage.
For a man who's had three hip replacements and multiple knee replacements, this was no small task.
"He is still overflowing with the inspiration of how to live and how to treat others," McGraw said. "He still leaves you with that inspiration. To know him is one of the greatest gifts I've had in my life.
"His parting words were, 'I want you to all be back here to celebrate my 100th.'"
As late as January, Parseghian didn't want to do the event at all, finally relenting after McGraw sent his former boss a last ditch letter. Parseghian finally surrendered to his former players, now doctors and lawyers with grandchildren of their own.
"It goes back to the lessons that he taught you," Novakov said. "He got knocked down, and did he ever get knocked down, but you battle back. He's lost battles. He's not going to lose this war. That's the way he is and we continue to learn from him."
On his 90th birthday it's clear the lessons learned from Parseghian extend beyond the locker room he called home for 11 seasons. His foundation, his family, the University's scientific community and the school's alumni have all felt his influence.
As the Ara Parseghian Medical Research Foundation advances hopefully toward a cure for Niemann-Pick Type C, its work continues to be driven by a national championship coach whose statue sits outside Notre Dame Stadium.
His greatest contribution may come off the field entirely.
"This is a disease that will be totally cured at some point, the only question is how long it's going to take," McGraw said. "Thank God he's been able to use his status to raise all this money. Now thank God Notre Dame has agreed to take on this responsibility in research.
"There would be nothing more phenomenal if the cure was found while Ara was still alive. He's never given up."