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2012 Bostonians of the Year Honorable Mention

Joe O’Donnell made a small but significant cystic fibrosis victory possible

With his Joey Fund and his experiment in venture philanthropy, the father kept his late son’s memory alive.

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 JOE AND KATHY O’DONNELL could have done many different things after their first child, Joey, drew his final, labored breath and succumbed to the disease, cystic fibrosis, that had plagued him all 12 years of his life. They could have cursed their fate, then and forever. They could have banished the very name of that dreadful illness from their vocabulary. They could have simply become different people, harder people, and moved on.

But they didn’t. It’s not their way. Even before Joey died in 1986, Joe O’Donnell began raising money to battle cystic fibrosis, not so much to help his son, but to help those he didn’t know. After Joey died, he launched the Joey Fund, bringing in many millions of dollars at annual movie screenings, hot dog festivals, and bowling nights.

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Joe O’Donnell is an unusual guy. He wears his working-class Everett roots like a favorite sweater, yet he has two degrees from Harvard, unspeakable wealth from a concessions company he founded, the Boston Culinary Group, and has been the casual confidant to governors and presidents (the Bushes).

In 2003, Robert Beall, the widely respected president and CEO of the Cystic Fibrosis Foundation, asked O’Donnell for a favor. Beall had a novel, risky plan, in which his nonprofit foundation would invest tens of millions of dollars in for-profit bioscience companies to spur scientists to aggressively seek a cure for the disease, a strategy that would come to be called venture philanthropy. Would Joe O’Donnell raise the money — $175 million, to be exact?

So the Boston businessman traveled to every corner of the country. He dialed up wealthy friends and business leaders. He pleaded for a cause that had touched him deeply and touches him still. In the end, he raised $176 million, two years ahead of schedule, by getting, as he once said with a soft laugh, “five million here, ten million there.”

Cystic fibrosis is caused by a defective gene that results in abnormally thick and sticky mucus in the air passages, lungs, and digestive system. Patients choke down dozens of pills a day and withstand painful physical therapy, but ultimately, unable to breathe and process food, they typically die by the time they reach their mid-20s.

Fueled by the flow of foundation cash in the early 2000s, scientists in San Diego and later at Vertex Pharmaceuticals in Cambridge performed backbreaking, then groundbreaking work in pursuit of a cure. They found the compound that became Kalydeco in 2004. By 2008, a critical phase of testing bore stunning results. A clinical trial of the twice-a-day pill that began in 2009 was so successful that the FDA then approved the drug in half the typical time. Patients were breathing easier and gaining weight. The drug, which works on about 4 percent of cystic fibrosis patients — those who have a specific mutation of the disease — was shipped to market this year. Scientists are making progress on additional drugs that are expected to address the vast bulk of those with cystic fibrosis. “Joe O’Donnell is instrumental in all of this,” says Beall. “We told him we didn’t have the money, we needed his help, and it was that first $175 million that allowed us to push the frontiers.”

O’Donnell, 68 and living in Belmont, is back at it, in another fund-raising campaign. His time with Joey was painfully brief, but his commitment to the cause will never die.

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