This is the second in a new series on patient participation in guiding medical research.
Perry Cohen is a new friend and, I’m thrilled to announce, a new collaborator.
I learned about Perry during my MIT college reunion this June – my classmate Becky Donnellan heard about my work and said “You should meet Perry,” whom she’d met somewhere along the line. On my next trip to DC I met up with him, and indeed we hit it off.
But I’m not thrilled with the reason we need to collaborate: Perry has Parkinson’s Disease, and, as he puts it, “I’m losing my voice.”
That’s no small issue, because for sixteen years Perry has been a powerful and effective voice for the Parkinson’s patient perspective at the National Institutes of Health and the Institute of Medicine. In the progression of his disease, at present we can speak on the phone just fine, but the adrenaline of giving a speech – which he’s good at – is too much. In February he froze up, on stage, for two minutes, and had to be helped off.
So he’s asked me to help with his public speaking.
In this post I’ll introduce Perry, describe how we’ll be collaborating, and close with a specific example that shows how strongly he and I are aligned: an article he co-authored five years ago that blew my mind last week. (I mentioned it in Saturday’s post that began this series.)
Lodewijk Bos (Twitter @