A Moment to Honor Sean Forrester Scott

11 02 2009

I was saddened to learn of the passing of Sean Forrester Scott.  Below is the most recent email from ALSTDI concerning the loss of one of our brothers of hope.  His story is beautiful and tragic.  My heart goes out to his wife, his family, and his friends.  We can only hope to honor him by never putting down the fight and in efforts all of us make to try and end this terrible disease. 


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 Nietoand 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 last year. He was married in June 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 Fundat ALS TDI you can do so here:




Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: