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A legacy beyond the grid-iron: Ara Parseghian's fight against deadly disease

NOTRE DAME, Ind. --While football was Ara Parseghian's passion for much of his life, after leaving the gridiron, he focused on another battle. It was a battle against an opponent that took several grandchildren from him.

"These are the three grandchildren: Marcia, Christ, and Michael. They were diagnosed with Neimann-Picks Disease [Type C] in 1994. Sadly, they succumbed to this disease," says Sean Kassen.

Kassen is the director of the Ara Parseghian Medical Research Fund, headquartere at Notre Dame. 

The fund was created after his children were diagnosed with the deadly genetic disorder.

"Usually, kids don't make it to adulthood," adds Kassen.

He says, this was Parseghian's true mission.

"He pretty much spent the last 23 years of his life, dedicated to trying to find a cure," explains Kassen. "Fight one for the underdog. We thought that this would be a great match to focus on this rare disorder and trying to help them find a cure."

Parseghian fought to raise awareness and money for research, to make sure no other family endures the loss that his did.

But with roughly 125 families affected by NPC in the country, others also mourned the loss of their own. 

One of those families, living in West Lafayette, Indiana. 

"Everybody in South Bend knew of Ara the coach. But Ara the man, Ara the grandpa, is much better than Ara the coach. And Ara the coach was pretty good," says Trent Smith. 

Smith knew Parseghian differently than the thousands of Notre Dame football fans. 

He lost his three children to NPC, too. 

"Keaton, who passed away in May 2015 at age 14. Riley pased away in 2014. And then my son Brayden passed away in 2006," explains Smith. 

He admires how the Parseghian family took their loss, and did something about it.

"From the day his family got their first NPC diagnosis, they set out to find a cure," says Smith. "At that point, they were pretty much the only ones moving in that direction. The got the NPC research, they got the awareness. They got the ball rolling to where we all are today."

Kassen also believes that without Parseghian, there wouldn't be as much progress with treating the disease. 

Already, the fund has a Phase Three clinical trial in the works. 

But the most important thing? Hope.

"When our first kid was diagnosed, there was no treatment for NPC. It treated symptoms," says Smith. "Now, there's hope that in their kids' lifetime, there will be a cure."

Paresghian viewed fighting this deadly disease, as winning a crucial game.

"He used a football analogy when speaking to families. We got this ball at the one yard line. We're now marching down the field and we're getting that touchdown," recalls Smith. "That's what he and his foundation has done for us."

"He really wanted to beat this disease. We were really hoping to announce the first cure before he passed," adds Kassen.

His death will not stop his team of advocates and champions from pursuing his goal. 

"This don't stop today. His legacy continues on. When we get that cure, he'll be looking down on us with a big smile," says Smith.

Kassen agrees and says, they won't stop until getting diagnosed with NPC is no longer a death sentence.

"To carry on that legacy and help them find that cure," he says.. "Our goal is to win this one for coach."

In lieu of flowers, the family is asking for donations to the Ara Parseghian Medical Research Fund to continue his fight. 

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