Former University of Michigan hockey player empowering others while battling ALS

Posted at 7:00 PM, Sep 21, 2016
and last updated 2016-09-21 19:00:39-04

KALAMAZOO, Mich. -- Scott Matzka retired from a decorated professional hockey career to work in Kalamazoo with his wife and two young children, but he says it was when he was diagnosed with Lou Gehrig's disease, or ALS, that his life's purpose was revealed.

A 38-year-old husband and father of two young kids, Scott says its his turn to stand up for others and raise money to find a cure for this debilitating disease.

Scott Matzka is a former University of Michigan hockey player who - in his first of four seasons - assisted with the game-winning overtime goal to help the Wolverines skate to their '98 NCAA championship. An NHL prospect, Scott went on to play professional hockey for the ECHL and AHL for two years, then another nine seasons in Europe.

“In a way I was sort of destined to play hockey," Scott smiled, recalling his early years skating with his older brother while growing up in Port Huron.

It was sometime in fall of 2013 that he says he noticed something changed; abstract symptoms he almost couldn't put into words.

“I would reach into the middle console to grab something, and I would get cramping in my wrist or my forearm,"  he said. "If I made a fist it was really difficult sometimes to release the fist.”

Those symptoms grew, leading to a litany of tests and eventually two confirmed ALS diagnoses by fall 2014. A progressive neurodegenerative disease, ALS causes muscles to atrophy, or decay, which leads to paralysis, then ultimately respiratory failure.

According to the ALS Association, there is only one FDA approved drug, riluzole, that slows progression of the disease in some people modestly. There's no known cure and the need for research is urgent. To donate, see their website and Scott's website.

“The walk back from the EMG room back to [the neurologist's] office, and then he shut the door, and then he sat down—it felt like it took forever," said Catie Matzka, Scott's wife. "Then when he delivered that news, it’s one of those moments I wish I could erase but it’s one I know I’ll never forget.”

Scott and Catie's mission now is empowerment: for their two young children, themselves, and for others. Their website with their mission, My Turn, works to create awareness, to help fund Scott's medical care, and to fund research to find treatment and a cure.

“We thought about a lot of things. And one of the things we thought about was: how can we have an impact on this disease?” said Scott.

“This cause needs more funding, "said Catie. "75 years later we’re in the same position: 75 years after Lou Gehrig lost his battle with ALS. And sometimes you think about that, and you think, '75 years; how is that happening still?'”

From their epic Ice Bucket Challenge to their unwavering support network, they are grateful.

“In a way I feel like I’m crowd surfing; like all these people around me are just holding me up and allowing me to be strong and face this head on," said Scott.

They hope to inspire others to take their turn, and work to end this disease.

"It’s my turn and I’m going empower the people around me to take theirs and then once I’m gone hopefully that lives on and that idea and movement and organization keeps driving that message forward," Scott said.

If you would like to get to make a donation or get involved, see Scott Matzka's website for links to and upcoming events including an ALS Walk for a Cure Oct. 8 in Portage. Later that day, he will also be dropping the puck at Yost Arena for a tribute game when the University of Michigan takes on Union (NY).