United in their fight against cystic fibrosis, ALS

From across the polished table in a conference room with a view of the Charles River, the two strangers recognized something familiar in each other. Something urgent. And visceral.

There is a common expression that sometimes we invoke too casually: a matter of life and death.

To Joe O’Donnell and Kevin Gosnell there is nothing casual about it.

“He has great courage,’’ O’Donnell told me Monday . “When I looked at Kevin, I saw myself 40 years ago.’’

And then Joe O’Donnell clasped his right hand in front of his eyes, fully extended his left arm, and wiggled that hand — the mannerism of someone staggering through darkness.

But Joe O’Donnell, who held his precious son Joey when the 12-year-old drew his last breath in 1986, has worked his heart out to break into the brightness.

Over the past 30 years, he’s raised more than $350 million in the fight against cystic fibrosis. He launched the Joey Fund that’s become a colossus. And he embraced something called venture philanthropy, investing in for-profit bioscience firms — a collaboration that ultimately will yield treatment for more than half of CF patients.

“We had no cure, so this is pretty dramatic,’’ said O’Donnell, a proud son of Everett with two Harvard degrees who built his fortune from his concessions company called Boston Culinary Group.

Joe O’Donnell is a take-charge guy. So is Kevin Gosnell.

Gosnell had built his asphalt firm into a $25 million enterprise by the time he was diagnosed last year with ALS, amyotrophic lateral sclerosis, the scourge more commonly known as Lou Gehrig’s disease. It’s a neurodegenerative death sentence. There is no cure.

“I’m using a breathing machine pretty much all the time now,’’ Kevin said this week by phone from his Hanover home. “I’m doing what I can, while I can.’’

And part of what he’s doing is meeting with people like Joe O’Donnell, whose leadership lessons he’s adapting in the fight against the cruelty of ALS.

The parallels are striking. Each disease afflicts a relatively small percentage of the population, robbing them of the full-wattage attention other medical killers receive.

excerpt © 2016 Boston Globe