United in their quarrel opposite cystic fibrosis and ALS

March 23, 2016 - als

CAMBRIDGE — From opposite a discriminating list in a discussion room with a perspective of a Charles River, a dual strangers famous something informed in any other. Something urgent. And visceral.

There is a common countenance that infrequently we plead too casually: a matter of life and death.


To Joe O’Donnell and Kevin Gosnell there is zero infrequent about it.

“He has good courage,’’ O’Donnell told me Monday
. “When we looked during Kevin, we saw myself 40 years ago.’’

And afterwards Joe O’Donnell clasped his right palm in front of his eyes, entirely extended his left arm, and wiggled that palm — a pose of someone towering by darkness.

But Joe O’Donnell, who hold his changed son Joey when a 12-year-old drew his final exhale in 1986, has worked his heart out to mangle into a brightness.

Over a past 30 years, he’s lifted some-more than $350 million in a quarrel opposite cystic fibrosis. He launched a Joey Fund that’s turn a colossus. And he embraced something called try philanthropy, investing in for-profit bioscience firms — a partnership that eventually will produce diagnosis for some-more than half of CF patients.


“We had no cure, so this is flattering dramatic,’’ pronounced O’Donnell, a unapproachable son of Everett with dual Harvard degrees who built his happening from his concessions association called Boston Culinary Group.

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

Gosnell had built his pavement organisation into a $25 million craving by a time he was diagnosed final year with ALS, amyotrophic together sclerosis, a flay some-more ordinarily famous as Lou Gehrig’s disease. It’s a neurodegenerative genocide sentence. There is no cure.

“I’m regulating a respirating appurtenance flattering most all a time now,’’ Kevin pronounced this week by phone from his Hanover home. “I’m doing what we can, while we can.’’

And partial of what he’s doing is assembly with people like Joe O’Donnell, whose care lessons he’s bettering in a quarrel opposite a cruelty of ALS.

The parallels are striking. Each illness afflicts a comparatively tiny commission of a population, robbing them of a full-wattage courtesy other medical killers receive.

O’Donnell and Gosnell any move an present credit to their cause. “I have credit since we mislaid a son,’’ O’Donnell says. Gosnell’s credit is a augury he confronts any waking moment.

And both group commend try hospitality as critical.

When we initial wrote about Gosnell in January, Dr. Robert H. Brown Jr., a heading ALS researcher during UMass Medical School in Worcester, credited him with building a partnership between a vital ALS centers in Massachusetts.

One of those partners is a Cambridge-based ALS Therapy Development Institute, that is displaying a research, in part, on a routine that led to a breakthrough efforts to fight CF.

“It’s roughly a ideal parallel,’’ pronounced TDI orator 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 a catalyst.’’

Gosnell founded ALS ONE, that has lifted $800,000, and he expects that figure to stand to $2 million this year.

Now, he’s got an additional helper: Joe O’Donnell, a man whose bureau he visited recently.

“When Joe was explaining what they did, we was like, ‘Wow. This is not distant off from what we’re perplexing to do,’ ’’ Gosnell told me. “I consider we’re on a commencement of a route that he went down. It’s not going to be accurately a same, though it’s close.’’

Few know improved than O’Donnell how tough a highway forward might be for ALS combatants.

“For years,’’ he said, “I was Johnny Appleseed throwing seed on stone.’’

But on a day they make a proclamation about a breakthrough heal for ALS, Kevin Gosnell’s wife, Kathy, will no doubt brush behind tears as their 3 sons proudly observe: Dad helped make that possible.

Joe O’Donnell knows that feeling, too.

Thomas Farragher is a Globe columnist. He can be reached during thomas.farragher@globe.com. Follow him on Twitter @FarragherTom.

source ⦿ https://www.bostonglobe.com/metro/2016/03/22/united-their-fight-against-cystic-fibrosis-and-als/zQP6yBO4Lw5eXZwWd8VtyJ/story.html

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