From Adam Amdur, Chief Patient Officer, on behalf of the American Sleep Apnea Association
We are definitely living in the Twilight Zone. How do I even begin to grieve for a man who we lost in spirit over a year ago? Somebody hit the pause button on a cold frozen D.C. day late last January.
A few years before, I’d sat across a big conference room table from John Walsh—a man who looked like Ernest Hemingway. We were surrounded by 150 of the top minds in health care from around the world.
This first kickoff meeting for PCORnet (the National Patient-Centered Clinical Research Network) happened during an early January snow storm amidst a government shutdown that forced us all into a cramped boardroom at PCORI (the Patient-Centered Outcomes Research Institute).
With a blizzard raging outside, John and I were tasked with attempting to “build the space shuttle while in flight” as representatives of two of the original patient-centered research networks (PPRNs) funded by the Affordable Care Act.
My smart mouth actually suggested to the room that we not leave until we had it all figured out—just like the scene in 12 Angry Men, with the storm raging all around us. What better environment for a working session to find solutions while under pressure?
Little did I know that this loveable man was a neighbor in the same condo community as my grandmother and mother and that he knew both of them.
It turned out John was the General Patton of patient advocates, literally a decade ahead of most nonprofit leaders in the healthcare space.
Proof of his legacy remains in the thriving COPD Foundation, which paves its way forward, day by day and minute by minute, seeking answers and solutions for so many who suffer.
John mapped the way forward for so many generations, and not just with talk, but with action.
Together, we conceptualized a future PCORnet patient-powered research network (PPRN) demo project titled “O2verlap,” based on newly emerging research into Overlap Syndrome, a condition in which two breathing disorders—chronic obstructive pulmonary disease (COPD) and obstructive sleep apnea (OSA)—occur simultaneously in a single patient.
Over the course of the next few years, after meeting this legend and his amazing brother in arms, Bill Clark (both so graciously mentoring me), the work we now do at the American Sleep Apnea Association is a product of their combined influence: innovation and evolution of our Sleep Health Patient Community, now and into the future.
I would like to propose renaming the O2verlap study to honor this unforgettable mentor: The John Walsh O2verlap Study, examining COPD and OSA together to both investigate comorbid effects and to manage the health challenges of those who suffer from Overlap Syndrome.
John, we will never forget you and your drive. I find comfort in always asking myself, “What would John do?”
Miss you everyday,
Adam Amdur, Chief Patient Officer, on behalf of the American Sleep Apnea Association