Scott's Story

Scott Matzka is a 38 year old father of two that was diagnosed with ALS September of 2015. This is his story.

From Port Huron, Michigan, to an NCAA national championship at the University of Michigan to a highly successful 11-year professional career in North American and European leagues - Scott Matzka's entire life has been a continuing ice hockey success story. Throughout his career, he has excelled as a highly decorated player, coach and mentor.

In 2012, Scott left professional hockey and entered the business world, working first for Maestro, a software developer in Kalamazoo, MI, and later the Phoenix Group, industrial consultants in Springboro, OH.

As a professional athlete, Scott has spent a lifetime paying close attention to his body and the signals it sends him. So he took notice in the summer of 2014 when he began to experience stiffening in his fingers, cramping and eventually muscle twitches and tremors. What followed was a seemingly endless string of consultations and tests - MRIs of the brain and spine, electromyography (EMG) and neuroconductivity evaluations.

After a referral to the University of Michigan and further tests, doctors diagnosed Scott with amyotrophic lateral sclerosis (ALS), a rapidly progressive, invariably fatal neurological disease that attacks the nerve (neurons) responsible for controlling voluntary muscles. Unable to function, the muscles gradually weaken and waste away (atrophy). Eventually, the ability of the brain to start and control voluntary movement is lost. Most people with ALS die due to respiratory failure, typically within three to five years from the onset of symptoms. The cause of ALS is unknown and there is no cure.

It's my turn. My turn to speak up. My turn to speak out and stand out.

It's my turn. My turn to speak up. My turn to speak out and stand out.

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."

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