United in their fight against cystic fibrosis, ALS
CAMBRIDGE — 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.
O’Donnell and Gosnell each bring an instant credibility to their cause. “I have credibility because I lost a son,’’ O’Donnell says. Gosnell’s credibility is the prognosis he confronts each waking moment.
And both men recognize venture philanthropy as critical.
When I first wrote about Gosnell in January, Dr. Robert H. Brown Jr., a leading ALS researcher at UMass Medical School in Worcester, credited him with building a partnership between the major ALS centers in Massachusetts.
One of those partners is the Cambridge-based ALS Therapy Development Institute, which is modeling its research, in part, on the process that led to the breakthrough efforts to combat CF.
“It’s almost a perfect parallel,’’ said TDI spokesman Robert Goldstein. He hailed Gosnell’s efforts toward collaboration. “I’ve been doing this for 12 years, and that’s never happened before,’’ he said. “Kevin was the catalyst.’’
Gosnell founded ALS ONE, which has raised $800,000, and he expects that figure to climb to $2 million this year.
Now, he’s got an extra helper: Joe O’Donnell, the guy whose office he visited recently.
“When Joe was explaining what they did, I was like, ‘Wow. This is not far off from what we’re trying to do,’ ’’ Gosnell told me. “I think we’re on the beginning of the trail that he went down. It’s not going to be exactly the same, but it’s close.’’
Few know better than O’Donnell how tough the road ahead may be for ALS combatants.
“For years,’’ he said, “I was Johnny Appleseed throwing seed on stone.’’
But on the day they make the announcement about a breakthrough cure for ALS, Kevin Gosnell’s wife, Kathy, will no doubt brush back tears as their three sons proudly observe: Dad helped make that possible.
Joe O’Donnell knows that feeling, too.