What is the plan for living with the grim reality of a terminal disease? "There is no plan except living your life," says Scott. He talks about months of intense highs and lows for himself and his beautiful wife, Catie. Fast-tracking some of their life plans. And slowly "pulling back the curtain" for their children (six and four), trying to gently nudge innocent young minds toward understanding. "Our life has settled into a new normal," says Scott.

Scott believes most of us go through life never knowing our purpose. He believes ALS has revealed his. He wants to be an advocate: Capturing telling his story as a means of helping his family, bringing ALS out of obscurity and assisting other affected by the condition.

In spite of the cruel disease that holds him captive, Scott is grateful, blessed as he is with a compassionate employer, resources, benefits and an extraordinary network of family, friends, colleague and associates. Energizing this network for the benefit of his family and the larger ALS cause have become the focus of the time he has left. "It's my turn," says Scott "My turn to speak up. My turn to speak out and stand out - to do as much as I can to help my family and to help build awareness and understanding of ALS."