"It's my turn. I'm going to take my turn in doing everything I can to help people who are or will be affected by this terrible disease (ALS)." – Scott Matzka in The Players' Tribune, October 2016
Matzka, a member of the University of Michigan's 1998 national championship-winning hockey team, came to this realization in early 2016 after a conversation about confronting amyotrophic lateral sclerosis (ALS), with which he was diagnosed late in 2014.
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Matzka was still in the early stages of the neurodegenerative disease in 2016 and he was inspired to take his turn giving a voice to others silenced by ALS, knowing the disease would eventually silence his own voice, too. He has spoken publicly about his experience all over the country and recently began a fund to help fellow persons with ALS.
Despite receiving the life-altering diagnosis in 2014, the Matzkas (Scott, his wife Catie, their daughter Reese and their son Owen) consider themselves fortunate. They've received endless support from their communities in Kalamazoo (where they reside), Port Huron (Scott's hometown), Ann Arbor (U-M's hockey program and Michigan Medicine's ALS Center of Excellence, where Scott is a patient) and even Cardiff, Wales (where Scott played hockey professionally).
For example, on Oct. 26, 2018, the Michigan hockey team will host its third annual ALS awareness game at Yost Ice Arena in support of the family. Members of the ALS Center of Excellence at Michigan Medicine will be on hand to share information about the progress being made in research and treatment of the disease.
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"Where would we be without the folks at the clinic?" Matzka said. "We've relied on the entire team for education, care, compassion and so much knowledge."
Matzka is among the 200 patients that receive care from the U-M Multidisciplinary ALS Clinic, which includes physicians, nurses, specialists and researchers. They have worked with Matzka throughout his disease progression to help him maintain a quality of life. Nearly four years since his initial diagnosis, Matzka is now totally reliant on a motorized wheelchair for transportation, he can no longer speak and he requires assistance to breathe. Nevertheless, that hasn't stopped the 40-year-old from doing everything he can to help others with ALS.
"Our family had been so blessed with support, emotional and financial, so I wanted to pass it on," Matzka said, with the help of a computer that he controls with his eyes to communicate.
When friend Joe Irwin, diagnosed with ALS at 32, was in need of a bathroom remodel to accommodate new physical needs, Matzka said he was prompted to initiate a 40th birthday fundraiser to cover costs. He also reached out to Julie Snelling, executive director of the Susan Mast ALS Foundation in Grand Rapids, Michigan.
"When Scott asked me if we could help Joe, I replied 'Scott, we meet a lot of people with these needs. Why not partner with us so we can help Joe and others like him with small construction projects?'" Snelling said.
The vision to help a friend, Matzka said, was transformed into "something bigger that could help more Joe Irwins that don't have the incredible support we've had."
Alongside the Susan Mast ALS Foundation, Matzka's MyTurn Project Fund was then created, offering small grants to ALS patients seeking funds for accessibility improvements. Sharing similar visions and goals, Matzka said the foundation is an ideal partner for the project.
"Their focus is on the patient, where I believe I can probably have the most impact," Matzka said.
Projects taken on by the MyTurn Project Fund are selected internally through a committee. Matzka and Snelling serve on it alongside Jennifer VanHorn Pfeiffelmann, the SMAF Board Chair and Ray Schnurstein, a Kalamazoo-resident who lost his brother at age 36 to ALS.
"Scott's enthusiasm and determination in the collective fight against ALS has been and continues to be amazing," said Eva Feldman, M.D., Ph.D., professor of neurology at Michigan Medicine and research director at its ALS Center of Excellence. "Since the day we met, Scott has been focused on action – how can he overcome this, how can he inform and raise awareness in the public? The fact that he's now helping fund the care for fellow persons with ALS is outstanding and it fits precisely in line with his character."
Upcoming projects include a shower insert for one patient and installation of a donated ramp to another.
"Scott is such an inspiration to others," said Snelling, "and it's been an honor to partner with
him."
Additional reporting and writing by Gabrielle de Coster.