ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, February 9, 2009

ALS Steals Another Advocate - Sean Scott

From ALS TDI --

It is with great sadness that we announce that Sean Forrester Scott, president of the ALS Therapy Development Institute, died today due to complications from amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease). Sean was 39. He announced his own passing in an email to his family and friends. The following are excerpts:

“Hello my friends….If you’re reading this then I am gone... at 39 of this miserable disease that afflicts my family….Just last year I was worried about turning 40. Now it appears I’ll never have the chance….. It’s both surreal and horrifying to watch as muscles fail and with them skills that you spent a lifetime developing simply disappear. I’d trade every minute that I’ve got left for just one more chance to run across the tennis court and crack a forehand….I spent the last decade building an infrastructure to combat this disease. I had declared war on it but in the end it got me first. At a minimum, I think I earned the right to be referred to as KIA and not a victim. I’d prefer that you remember me that way.”

Sean became active with ALS TDI when his mother, Vanna, was diagnosed with the disease in 2001. He quickly became a leader on the research and development team – teaching himself neurobiology, and reading the anthology of publications on potential therapeutics. He developed the information management system used by the research team – allowing for greater collaboration, innovation, and the streamlining of experiments and process. He focused on building the system and infrastructure needed to execute the largest assault possible. With the system built and working, Sean focused on making sure that scientists in the lab had the resources they needed to act on the best ideas quickly, and he sought out the funding needed to speed up the processes. He went on the road and met with everybody that would listen. He encourage all that could to take action. This led him to Augie Nieto and Sharon Hesterlee. The funding provided through the ambitious partnership he brokered between ALS TDI, Augie’s Quest and MDA, accelerated ALS research like never before.

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