What Stephen Hawking meant to the ALS community

By Piera Pasinelli, PhD

Dr. Pasinelli is the Director of the Jefferson Weinberg ALS Center and the Frances and Joseph Weinberg Professor in Neuroscience at the Sidney Kimmel Medical College at Thomas Jefferson University.

Around midnight on a Tuesday night, I was awake waiting for my son Tommy to come home from soccer, as I do every Tuesday. I like our late-night talks. The house is quiet and, even if for just 5 minutes, Tommy and I catch up on life.

He came home with the news that Stephen Hawking had died. Neither Tommy nor I ever met him and, at least as far as I am concerned, never completely understood his theories. But both of us had a lot to say about this brilliant mind and remarkable man, like we knew him. Both of us learned important lessons from him.

The news of his passing after battling ALS for so many years made me realize that what I learned from his example is to never give up, to keep searching for the answers to understand this devastating disease, and that it is possible to live a purposeful life with ALS–however long.

Hawking’s unusually long life with ALS exposed to the world the knowledge that ALS is very variable. Some patients die a few months after diagnosis, some a few years and others live for 20 or more years. We still don’t know why Hawking lived so long or why survival in patients is so variable, but the research community is looking inside the patients’ cells to identify genes and/or other factors that affect the speed of disease progression and explain why patients are so different.  If we know the why(s), then we can figure out ways to stop disease progression or make the rapidly progressing patients live longer.

What Hawking’s productive life with ALS taught us the most is what Steve Gleason, another ALS patient, wrote Tuesday night on social media:  “Stephen Hawking inspired me before ALS…………. But since ALS he saved my life with his example- people diagnosed with ALS can continue to live productive & purposeful lives for decades”.

Long or short life, this is the mission of the Jefferson Weinberg ALS Center:  “To help patients live a purposeful life with ALS”.  This is what Steve Hawking and Steve Gleason, along with the other courageous and resilient ALS patients teach us every day.  And if they can live a productive life with the disease, then we have to keep going, working on their behalf to figure out how to stop ALS.

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