GRAND RAPIDS, Mich. — This Saturday is the annual Grand Rapids .1K race that helps raise money and awareness in an effort to cure Duchenne muscular dystrophy.
The shockingly short race happens at noon Saturday, though the festivities begin at 9:30 a.m. at New Holland Brewing The Knickerbocker, 417 Bridge St. NW in Grand Rapids.
Mike and DeAnne Friar are the parents of two boys, Kevin and Kyle, with Duchenne muscular dystrophy. It is the most common fatal genetic disorder diagnosed in childhood.
Doctors say close to a dozen West Michigan families have boys with this deadly disease.
Kevin passed away in 2018 due to complications related to DMD.
“Its never an easy diagnosis to get,” DeAnne Friar said. "It's a tough one to take. But were in it together and things are changing."
This year, New Holland is brewing a beer in honor of Kyle Friar, who will be at Saturday's race. It is called Kyle Style, and the 15-year-old even got to visit the brewery while it was being made.
Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.
Parent Project Muscular Dystrophy’s mission is to end Duchenne: accelerate research, raise voices in Washington, demand optimal care for all young men, and educate the global community.
"You've got to have hope," DeAnne Friar says. "There's no way you’re going to keep going unless you have hope. And having all these people around us and supporting us, how can you not be hopeful when you have the strength of everyone around you?"