ALS Advocacy is not fun. The loss of life is relentless. The funerals are heartbreaking. The lack of progress is frustrating.
Usually I'm braced a little when we know that a person with ALS has taken a bad turn. The grief enters and leaves at its own pace.
Last week a different kind of death and grief entered our lives like a shot out of the blue. We lost one of our most effective advocates. His death was completely unexpected and did not involve ALS.
I use twitter a lot. I'll tweet to pharmaceutical companies and journalists and politicians to try to shine some light on ALS. Seldom do the pharmaceutical companies bite. I'm just an individual tweeter, after all. A few years ago somebody from the Lilly Open Innovation twitter account exchanged tweets with me. That led to some messages. That led to a meeting to discuss clinical trial enrollment barriers for those dealing with ALS. That led to many more meetings and chats at Lilly and Starbucks and Medicine X. And that led to interactions with all kinds of activist-patients with a variety of diseases.
How did this happen? Meet Jerry Matczak. Jerry was paying attention that evening a few years ago on twitter and he wasn't afraid to engage in constructive interactions. He listened. Oh, how he listened. He didn't get defensive. He never said, "But you don't understand." He really listened.
And Jerry dreamed as he listened. He saw the potential of social media and technology to improve clinical research by making patients part of the solution. He saw bigger pictures than most of us.
And then Jerry delivered solutions.
Dozens of e-patients in every disease area have Jerry stories to tell. He listened. He dreamed. He delivered.
Jerry was genuine. Jerry was a real person who experienced his own loss of a brother to AIDS before there were effective treatments. Jerry grasped urgency, and he knew the potential of his industry to save lives that are being lost today.
And on Thursday afternoon I received an email from another ALS advocate that Facebook was buzzing that Jerry had died. No. That can't have been right. I just saw him tweet a few days ago. It must have been some kind of mistake. No, it was right.
The pharmaceutical industry has a gaping hole to fill now. The man with the extraordinary gift to listen and engage e-patients and figure out solutions is gone.
My comfort moving forward is that we all have the example and the standard to follow. We just need to ask ourselves, "What would Jerry do?"
