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Prominent Flatley Family Launches Boston Nonprofit for Cystic Fibrosis Drug Research

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involved with the expenses of the business,” Flatley says. “I’m involved, not with the science end of [CFRx], but I’m involved as much as possible with the expenditures.” His family’s strong religious beliefs are also visible in the CFRx’s lab, where a crucifix is mounted where scientists can see it as they do their important work, he says.

Flatley and his family have been long-time financial supporters of the Cystic Fibrosis Foundation, a Bethesda, MD, nonprofit that has helped fund the development of new therapies for patients with the disease, who number some 30,000 in the U.S. alone. The foundation has played a role in prolonging cystic fibrosis patients’ lives, but the median life expectancy for people in the U.S. with the disease is still around 37 years, according to the foundation.

Writing checks to the CF Foundation wasn’t enough for Flatley. In early 2008 he used Monster.com to track down Fitzpatrick, with whom he had played hockey at Milton Academy in the late 1970s, and hired the former Genzyme (NASDAQ:GENZ) chemist to help him explore options to start an organization involved in promoting cystic fibrosis drug research directly.

They considered making venture investments in biotechs developing drugs for the disease, as well as launching a contest with prizes for those who advance potential cures, much like the Cambridge, MA-based nonprofit Prize4Life strives to provide incentives to ALS researchers. (Thomas Flatley died in 2008 after his own battle with ALS, a neurodegenerative disease.) Yet Flatley says he believed he could make the biggest impact with an organization that conducts its own drug research, with a business model more akin to the ALS Therapy Development Institute in Cambridge. He says they talked about the idea with John Heywood, the MIT engineering professor whose family founded the ALS research institute.

The effort to launch CFRx won quick support from Bob Coughlin, the president and CEO of the Massachusetts Biotechnology Council, whose son has cystic fibrosis. Coughlin, who was one of the first people Flatley talked to about the organization, put Flatley in touch with Patrick Marshall, another parent of a child with the disease. Marshall has built deep connections in the cystic fibrosis research community through his work as principal at the Portsmouth, NH-based life science headhunting firm Stratacuity. He played a key role in recruiting scientists for CFRx, which now has a full-time staff of six people, with three more hires in the works, Fitzpatrick says.

Flatley says the late-2008 launch of the nonprofit turned out to be good timing. The financial meltdown was a … Next Page »

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  • Sandra Engebretsen

    From the mother of a 6 year old with cystic fibrosis, Thank You to the Flatley family for taking on this mission!

  • SeamusNH

    I have a friend with two sons with CF. Nice to see this. My father knew John Flatley when he came to the US from Ireland. Flatley was installing gas appliances in three deckers in Dorchester at the time. He then started buying and renovating the three deckers leading to an outstanding career in real estate. A fine example of an immigrant living the American dream, and giving something back as seen in this CF initiative. My father and all the other old Irish guys that worked in the post office, Edison, Boston Gas, etc. appreciate this…

  • Rose Lin

    My name is Rose Lin, and I am a co-founder of JHL Biotech. JHL’s mission is to make world class medicines affordable. One of our portfolio products is a Pulmozyme biosimilar. Pulmozyme is the current best way for CF patients to clear their lungs and is an important part of almost all CF patients’ daily regimen.

    JHL’s other co-founder, Racho Jordanov, is also an American immigrant from Bulgaria. I am an immigrant from China. We are both
    living our American dream and trying to give back to society. Both of us hope we can reduce the cost of treatment for CF patients.