Rare Disease Report

Retired Hockey Player and ALS Patient to Star in New Documentary

JUNE 08, 2017
Mathew Shanley
Scott Matzka is a retired professional hockey player.
Over the course of his 12-year career, Matzka scored 205 goals, assisted on 330 others, and racked up 535 total points.
Scott Matzka is a family man.
With his wife, Catie, and their son and daughter, Matza lives in Kalamazoo, Michigan. Together, the four enjoy trips to the park and visits from the children’s grandparents.
Scott Matzka in an amyotrophic lateral sclerosis (ALS) patient.
In the Fall of 2013, Matzka began experiencing symptoms, like stiffness in his fingers when he was painting his garage, or cramping in his forearm when he reached for coins in the center console of his car. In 2014, when he was 35 years old, his ALS diagnosis was confirmed.
For ALS patients, nerve cells in the brain and spinal cord gradually deteriorate over time until all muscle control is lost. The disease is a fatal one, the cause is unknown, and at present, there is no cure.
Soon, Matzka will be the star of a documentary. Kalamazoo-based production firm Rhino Media is in the midst of producing a documentary film about the former hockey player, based on his own work to spread awareness for the disease through his Take a Turn campaign.
The documentary, titled "My Turn: One Man's Journey with ALS," is serves a couple of different purposes for Matzka. While he and Rhino both want to spread awareness about a demoralizing, terminal illness that many people are facing, Matzka also hopes to leave his children memories of their father. He wants to show them who he was, long after he's gone.
“Nothing compares to the difficulty of looking at my kids and knowing they’re going to probably only remember me as a sick man,” Matzka wrote in former New York Yankee Derek Jeter’s online publication The Players’ Tribune last October. “They are four and seven years old now. They don’t know what ALS is. All they know is that daddy can’t run or skate with them.
There is a Kickstarter attempting to raise enough $25,000 in production funds, which ends on Saturday, to finish the documentary. As of this writing, the project needs less than $500.
The common goal of Rhino and Matzka is to have filming completed by the end of 2017, and for the documentary to be completed and released by the summer of 2018.
"It's my turn," says Matzka. "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.”

My Turn | Kickstarter Trailer from Rhino on Vimeo.

In 2016, Rare Disease Report published a story about the documentary of another ALS athlete; former New Orleans Saint, Steve Gleason. In July 2015, former President Barack Obama signed into law the Steve Gleason Act of 2015, which allowed for individuals with severe neuromuscular disorders, like ALS, to have access to new technology, such as eye tracking accessories and speech generating devices through Medicare.

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