Philanthropist John Flatley Starts Venture Group to Back New Cystic Fibrosis Treatments

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CFRx, scientists and entrepreneurs started to approach him with their ideas for CF treatments. But the nonprofit wasn’t an appropriate vehicle for funding those ideas—hence the new venture group.

“It’s something that has evolved out of necessity more than anything,” says Flatley, whose real estate firm is based in Braintree, MA. “People are coming to me with ideas and they need funding. In order to get these things launched, somebody needs to take that first risky step. I decided to take on that role in the CF community.”

Flatley is also continuing to provide financial support to the Cystic Fibrosis Foundation, the Bethesda, MD-based nonprofit that has a track record of stepping up and funding drug developers in need of cash for new CF therapies. The CF Foundation has given funding for drugs under development at Cambridge, MA-based companies Vertex Pharmaceuticals (NASDAQ:VRTX) and Alnara Pharmaceuticals. Flatley says his lab also provides workspace for an employee of the CF Foundation, Martin Mense, and that he sees his nonprofit and venture group as adding to the foundation’s efforts.

The Flatley Discovery Lab is focused on discovering small molecule drugs that target the underlying defect in the disease, the CFTR protein, similar to treatments in development at Vertex, says Richard Fitzpatrick, the lab’s chief scientist and operating officer. (Vertex’s lead molecule for the disease, VX-770, is in late-stage clinical trials, and the company aims to file for U.S. regulatory approval in the second half of this year. In mid-stage clinical trials the drug showed that it could improve lung function without causing serious side effects.)

Even with a great need for new therapies, there’s significant risk in trying to get drugs approved for cystic fibrosis, just like with treatments for any other disease. Last week I reported the outcry in the CF community after an FDA panel gave a negative opinion of a dietary supplement for cystic fibrosis patients that was developed in the Boston area and is now owned by the drugmaker Eli Lilly (NYSE:LLY).

With his new venture group, Flatley is poised to take on big risks and seed the next generation of drugs for this awful disease.

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7 responses to “Philanthropist John Flatley Starts Venture Group to Back New Cystic Fibrosis Treatments”

  1. Felicia Weiner says:

    I have a 50 year-old daughter with this awful disease and all this time the CFF has been the most important component in the push to help find treatments and, I pray, a cure for cystic fibrosis. We Thank G-d for the John Flatley’s and the Bill Gates’ of the world who use their wealth for the benefit of others. Thank you so much for this effort.

  2. Angie Moran says:

    Yes thank you both for all you are doing I have a rare type of CF I also have a niece with CF age 19 and a Grandson of 3 who also has CF Thank you so much Bill Gates and John Flatley for all your help and hope for the future

  3. shelly says:

    Thank you so much, Mr Flatley, for your dedication to this cause. I am 50 yrs old and have CF. When given a life expectancy of 18 yrs, I never thought I would be living out my dreams as an adult with this disease. I have my own business and sell on HSN Television. When I was younger and they used to tell me that one day there would be a cure . . . I thought it was just words to make us all feel hopeful. Based on the advances made possible because of people like you, I now believe that I may live long enough to see CF stand for “Cure Found”, afterall. Sincerely, Shelly Maguire

  4. Random says:

    Not Genzyme, not even Boston.
    I am interested in CF drugs, though, and saw both John.John and MM as giving very similar, very bitter comments that were quite difficult to follow (even allowing for non native English). Neither had anything to do with the venture launch.
    BTW, I think the approach of VC funding rather than building it in house in a non-profit may make much more sense. It would also obviate the criticisms raised re the operations and team. Thoughts?

  5. mark ashwell says:

    OneWorldHealth ( is a good model for non-profit Pharma. CFRx is no where close to it. I am also interested in CF drugs, but you do not achieve success with random approaches; and half trained scientists as others wrote. The VC funding approach is for funding is a in-house lab which is funded by flately VC funds… They are operating since 2008 without success. As “S” put it that it is a flawed strategy by inexperienced scientists, who could not answer simple scientific questions. Keep your fingers crossed. I will do the same. Drug discovery is not an easy task otherwise CF drug should have been in the market. You cannot re-invent wheels using known failed methodologies for drug discovery.

  6. JD says:

    What is the progress? As Mark Ashwell puts it right, it is a waste of resources led by unqualified scientists.

  7. Jim says:

    Update in ventures ?