Scott's work made him famous. At the Perelman School of Medicine at UPenn, he was reknowned for teaching medical students, residents, post doctoral fellows, nurses and other Penn faculty in many different departments in the area of substance abuse. Dr. Mackler was remarkable as a brilliant researcher who studied the science of addiction.
But, he was inspirational to me and many others for far more than his work -
When Scott was only 40, he was diagnosed with Lou Gerhigs Disease, also known as ALS. This husband, father, respected neuro-researcher could run a marathon in three and half hours, yet his nerves were slowly degenerating, with his body betraying his brain. Eventually, Scott would become "locked in,"
his amazing brain functioning at its prime while his body was nearly paralyzed. Scott and his family took the challenges as they came. And if there was ever a family that would defeat ALS, it appeared the Mackler family would. Scott exceeded every expectation. He wasn't going to succumb in five years like most of those with this terminal diagnosis. And it was in Scott's honor that Newark celebrated its 14th 5K Walk/Run for ALS this past October - adding to the more than $1 million raised by this family to ensure all people with ALS have access to adapted communication technology.
In 2009, Scott was featured on CBS' "60 Minutes." His mobility and conventional communication stolen, Scott was utilizing then-cutting edge technology to facilitate communication which enabled him to continue his work in his beloved Perelman lab. And he was still there last April, 15 years after his formal diagnosis. And I think he would have been there today, if he hadn't lost his fight late Wednesday night.
My dad called this morning. Scott Mackler has left us. His facebook page bears this message,
It is with an incredibly heavy and sad heart that we pass on word that Scott passed away last night, after a brave 15-year battle with ALS. We are comforted by your messages; it inspires us to hear how Scott inspired you.
Early on, Scott recorded this voice message for his sons, ""I know the future holds lot of love and joy and pride and that life goes on and I'll be watching you along the way and I love you very much and I'll see ya." While Lou Gehrigs takes most voices, Scott would not let this disease take his.
Yes, Scott was remarkable, not for having ALS, but for fighting for his future when ALS threatened to take it. I have often thought of Scott during the last 12 years, since the gift of my daughter whose own voice is constrained by autism.
This little post won't do Dr. Mackler justice. I can't pretend to try. But, as I go into this night, my heart is with his family, the neighbors. When you wake-up tomorrow, be sure to use your voice. You don't know how blessed you are.
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