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FROM ALSTDI Site...

It is my regret to let the community know that Sean Scott, who has had a variety of roles at ALS TDI, most recently that of President, is no longer with us. Below is the announcement that we are emailing to our supporters.

Those who knew Sean will appreciate that he would not want folks to dwell on his death but rather to focus on what he strived for in helping not just his afflicted family but everyone facing this disease either through of the fate of genetics or the simple capriciousness that manifests as the sporadic disease.

Sean always appreciated a good laugh, never failing, for example, to chuckle at the bad hair jokes I would make at scientist’s expense. It’s his ready, subtle laugh that I will remember (when, for example, I look at what remains of my hair in the mirror) and now as I toast to Sean - his life and efforts,
John


John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute







Sean Forrester Scott (1969-2009)

2/9/2009

February 9, 2009

It is with great sadness that we announce the passing of Sean Scott, president of the ALS Therapy Development Institute died today due to complications from amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease). Sean, pictured below with his wife Nancy following their wedding in 2008, was 39 and 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. Dead 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 between research groups 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 process. He went on the road and met with anybody that would listen. 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.

Sean was diagnosed with ALS in early 2008. He was married in June of last year to Nancy Kelly, who also devoted herself to the fight with Sean when his mother was diagnosed.

“If you were around for any of the machinations related to my battling ALS you might have mistaken me for an ambitious person. In reality, I did it all so that I wouldn’t have to tell the green-eyed girl that I love that I’d be leaving her all alone. You may pity me for having half of my life stolen, but you should know that the part I got to live I lived happily and in love.”


In lieu of flowers, the Scott family asks that you live your life as Sean did – as happily as possible, and in love. If you would like to donate to the Sean Scott Fund at ALS TDI you can do so here: http://seanscottfund.alscommunity.org/
 
I had followed Sean's story for sometime, long before he was diagnosed. He was a friend of Augie, wow what a ALS advocate. I have to say that I have true heroes since ALS.
I mean you Granpa, MT, Jimmercat, Beth, Sam, Rose, Olly, Jen, Bebe, Irma, JoelC. Majorie, Crystal, April, Zaphoon,Zen,CindyM, Liz.. Gosh so many great people, I have missed so many.. All of you here, I think something good must come from ALS, and that is what it is.. All of you... Thanks CDUCK.. I
 
Great Guy for Sure

Sean was an inspiration to many of us...especially those of us who hang out at the ALSTDI forum. They are really working their butts off to try and test anything and everything under the sun. I think their sense of urgency was due in a large part to Sean, Augie, etc. who knew their days would be numbered if their work was not completed quickly. I hope and pray that the next leader of ALSTDI will have the same passion and a sense of direction for the quickest way to a therapy or even better a cure!
 
It's very sad to read about this. Another one gone...

Thank you Sean for all your efforts.
 
I didn't know of Sean, but I feel the loss none the less. Sometimes I am hesitant to get involved with this forum because I know i will be reading these memoriams until mine is written. It makes me so mad! I wish i knew how to funnel my anger for good as Sean must have done with his anger. I hope I can learn to deal with this as well as he did. I will strive to find my happy place in this horrid disease. My deepest sympathies to his family and friends. FIND THE CURE!
NancyS
 
Very inspiring and very sad. I will be saying a prayer for all who knew him or were tocuhed by his compassion to create awareness of this dreadful disease.

Love,
Cindy
 
Sean was a true warrior and someone that worked hard on behalf of ALS awareness. I hope that someone steps in to fill his shoes. My condolences to family and friends that knew him.

Zaphoon
 
A very noble and inspiring missive to all of us. 39. Difficult to believe and accept. Well, we do believe it but will never accept. God bless his family.
 
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