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My dad, Stephen Greenspan, was diagnosed with ALS in January 2004. Shortly before my sister Melissa’s wedding, my father went to a neurologist to understand why he, who had always been called “good with his hands” had trouble buttoning his shirt. Why he, a former drummer, could no longer tap his hands or feet to the beat. Why he, once an avid runner, was tripping right and left. The doctor looked him in the eye and said, “I guess you’re probably thinking you have ALS.” Um, no. Who would ever think such a horrific thing? When the kind doc told my dad to get his things in order and see the world, my dad responded with two words – and they weren’t “happy birthday.” I’ll let you guess what they were. And then he said, “I got a wedding to go to. I’m not getting anything in order.”
That reaction is so indicative of how our dad always thought. Stubborn and determined, he always used to say to his Silicon Valley colleagues, “GET ON IT.” For five years we watched as this disease took strength from his body - first his right hand, then right foot, then both hands, both feet, then ultimately his speech and breath. A cruel and humiliating disease -- he persevered with grace, dignity and a shitload of humor.
The only lie our dad ever told us was: I'm going to beat this thing.
So we were glad to be done with ALS when my dad passed away in 2009. But in January of this year, our dad's sister, Aunt Marilyn, passed away from ALS. What we thought for my dad was Sporadic ALS (like most cases) turns out to be FAMILIAL ALS. Simply put: finding a cure may just be a matter of life and death for me, my sister, my cousins, my niece.
ALS is an orphan disease affecting just 30,000 people in our country. Pharma is not interested in funding trials because unlike cancer drugs, they won't make money funding ALS drug development. But I might be one of those 30,000 people one day. So I'm asking you to : GET ON IT.
Thank you for your generosity and love and support.
Love, Alison Greenspan
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