Tar Heel of the Week: Chris Rosati turned a grim diagnosis into an inspiring message

Chris Rosati of Durham, who has been diagnosed with Lou Gehrig’s disease, founded the nonprofit Inspire Media to share his message.
Chris Rosati of Durham, who has been diagnosed with Lou Gehrig’s disease, founded the nonprofit Inspire Media to share his message. cliddy@newsobserver.com

Correction: This story incorrectly identified a Durham Academy teacher as Gib Fitzgerald. The teacher was Gib Fitzpatrick.

DURHAM - Chris Rosati didn’t know exactly what he would tell the group of Durham Academy high school students assembled in front of him late last year, but he got their attention right away.

“I told them I was there because I was going to die, and that this had given me a perspective on life,” he says.

He went on to share what he had learned since he was diagnosed with ALS, also known as Lou Gehrig’s disease: that his only regret was having worried too much, and that his life was a happy one, full of “loving, living and trying.”

The speech was a hit with the students, and it also inspired him to use the rest of his life to share his message.

Public awareness of ALS has risen sharply in recent weeks, as social media sites have been inundated with videos of people nationwide dumping ice on their heads as part of the “ice bucket challenge” to raise awareness of the disease, for which there is no cure.

For Rosati, becoming a public figure as he dies of the disease is his own form of raising awareness. Rosati grabbed headlines late last year with the “Krispy Kreme Heist,” in which he “hijacked” a delivery truck and then handed out doughnuts from the “stolen” truck.

He followed that up with the Big Idea for the Greater Good, or BIGG, initiative, which is helping other people, particularly students at Durham Academy and other schools, to experience the joy of helping others – and the satisfaction of seeing an idea through.

Earlier this month, his nonprofit group premiered videos of eight children fulfilling their own dreams.

He’s also spreading his message throughout the state and beyond in speeches and television appearances, and he’s writing a book of stories loosely based on his life that will impart his philosophy to his children.

Durham Academy math teacher Gib Fitzpatrick says Rosati’s impact on the school’s students, and many other people since, has been immense.

“They’ve started to realize that what starts as a small kernel of an idea, if you approach it with energy and enthusiasm, you can make things happen,” says Fitzpatrick, noting that Rosati’s illness adds to the impact of his message.

“A lot of people would have retreated into themselves. He’s expanded his impact on lots of people.”

Jamie Spatola, a board member of Rosati’s nonprofit organization, says that Rosati’s illness gave him a public voice and that his disease has afforded him an important message to share.

“His words pack a punch – one made more powerful by the fact that they are distinctly genuine,” says Spatola. “He wants people to experience the blessings without having to experience the disease.”

Learning by failing

Rosati grew up in Durham, where his father, a cardiologist, runs the well-known Rice Diet weight-loss clinic.

Rosati describes himself as a failed entrepreneur who started seven unsuccessful businesses over the years – including a dog-sitting business, a golf magazine and health care software. He also worked in marketing for several companies, including his father’s clinic.

He now sees those experiences as lessons that helped him start his current company, Inspire Media.

“I always wanted to start a company, and I learned everything I needed to know by failing,” he says.

An avid soccer player for much of his life, he was training for a triathlon when he started noticing muscle spasms. When he could no longer open a jar, he suspected something was amiss.

Several missed diagnoses later, in 2010, at the age of 39, he was diagnosed with the degenerative nerve disease amyotrophic lateral sclerosis. His wife was five months pregnant, and his first daughter was 5 years old.

He learned that the disease would cause the nerves in his brain and spinal cord to slowly stop working, causing his death. He might die within two years or 20, and medications would slow the progression of the disease only slightly.

He didn’t see major symptoms for two years, and as many do, he says, he was optimistic.

“It was easy to be in denial,” he says. “To think you’re going to be the 20-year case.”

But the disease progressed quickly. Four years in, he has lost weight, and can’t use his arms or legs. He sits in a custom wheelchair, and visitors hold the large cups of Bojangle’s tea he continually sips.

At first, he continued working as a vice president of marketing for a health care company. But he felt disengaged, impatient. He raised eyebrows among his co-workers by simply walking out of meetings that he felt weren’t worth his time.

“I just questioned what I was doing,” he says. “I realized I was running out of time, and I finally just said, ‘I quit.’”

Finding inspiration

He started doing some consulting and was thinking about his next move when he agreed to give a talk at his old high school, Durham Academy.

He didn’t prepare a speech but let loose the thoughts about his life he’d been considering since his diagnosis.

Somehow, in the course of the speech, he also brought up a funny dream he had long held – a desire to rob a doughnut truck and pass out the doughnuts, Robin Hood-style, to the people he passed.

He realized that to follow his own advice, he needed to try to follow up on his wish.

“You can’t tell 400 high school kids that you’re really happy you tried in your life, and then tell them about the Krispy Kreme thing and then not try to do it,” he says.

Krispy Kreme was willing to help him do it, and in December he piloted the truck to visit a hospital and the school, passing out doughnuts.

The stunt grabbed headlines locally and nationally, and Rosati decided to capitalize on the new attention by following through with his idea for a nonprofit organization. With Krispy Kreme as a key donor, he soon founded Inspire Media.

Helping others

The idea is simple: People have ideas on how to make other people smile or raise awareness, and he helps them do it, film it and share it with others.

The premiere at the Carolina Theater Aug. 3 was a grand affair, attended by close to 1,000 people, with the student filmmakers given red-carpet treatment.

In one video, two young men – one of them adopted as a child from Russia – treat strangers to a fancy dinner. In another, a group of students dressed as superheroes visit a children’s hospital.

Moving forward, he plans to produce one video a month, and to package and license them to television networks. By spring, he hopes to hire an executive director who will continue the effort once he’s gone.

He doesn’t know when that will be, but he hopes his example will inspire others to follow their dreams – and in turn raise awareness of ALS, much as the ice bucket challenge has.

“I hope that when I die people say they have to find a cure,” he says, “because who knows what that guy could have done?”

Know someone who should be Tar Heel of the Week? Contact us at tarheel@newsobserver.com or find Tar Heel of the Week on Facebook.