Boston Globe: Dedicated to Finding a Cure for ALS

By Thomas Farragher

HANOVER — Here's the kind of guy Kevin Gosnell is.

Each year he compiled a "dreams list.'' There are only so many hours in a day, so many days in a year, so he asked himself: What can I accomplish? Who can I help?

"Blessed? Are you kidding me?'' he told me Monday morning as we sat in the kitchen of his handsome home. "I couldn't have written it any better.''

So when he felt a pain in his calf on Columbus Day weekend in 2014 — away with his boys for a getaway in North Conway, N.H. — he dismissed it and endured good-natured ribbing from his sons about how out of shape he'd become.

Then, during a family vacation around Christmastime, the pain moved to his hamstring. He was out of breath, could barely carry the luggage, and silent-and-urgent alarm bells began ringing in his head.

By April, Kevin and Kathy Gosnell were praying for a diagnosis few would: Let's hope it's a brain tumor. Instead, by last May, Gosnell learned he had ALS, amyotrophic lateral sclerosis. That's the neurodegenerative disease commonly known as Lou Gehrig's disease. It has no cure.

Then Gosnell got to work. He said: "I put one question up on the wall: Why? Why has it been 74 years since Lou Gehrig died and we have no treatment?'' He aimed to find out.

He concluded that the research and fund-raising are largely done in splintered silos. For the 15,000 Americans living with ALS, a disease that kills 7,000 yearly in the United States, that has to change. He invited leading researchers to a meeting last year at Mass. General and was as surprised as they were when they all showed up.

"He is the first person to attempt to put together a collaboration between the major ALS centers in Massachusetts; he gets credit for that,'' said Dr. Robert H. Brown Jr., an internationally known ALS researcher at UMass Medical School in Worcester. "He's a man with prodigious vision and energy and he's very good at motivating people.''

Gosnell has founded something called ALS Knights to unite friends and family of ALS patients to raise money and encourage research. More than 1,000 people have signed up so far and in 90 days, $650,000 has been raised.

"I don't have a lot of time left because my breathing's going,'' he said. "I have prayed that I can find a path to make a difference. This is a cruel, horrific death. Nobody should die this way.''

In July, Gosnell traveled to Medjugorje, where in 1981 the Blessed Virgin Mary was said to have appeared before six local children. In that hill town in the former Yugoslavia, he prayed for days.

They say God works in mysterious ways. But Kevin Gosnell is the exception that proves the rule.

There is no mystery here. Gosnell is doing what he has done all his life. It's what he plans to do with what precious little life he has left. He's working hard. He's leading by example. He has no time for self-pity. Instead, he's inspiring the disease's leading researchers.

It's his gift to ALS victims to follow.

But more than that, it's a gift to his family, a poignant testament that three young sons will forever carry with them about their courageous dad, a leader until the end.