A Lakeview man is kicking off an 850-mile charity bike ride Friday in honor of his dad, who died of a rare disorder in 2012.
"His last month alive, he was in a hospital that just had no business treating somebody with this disease," Neil Versel said. "No one had any idea what it was. ... It's just the saddest thing I ever saw."
Versel's father, Mark Versel, died of MSA, or multiple symptom atrophy, in May 2012.
At first glance, MSA seems a lot like Parkinson's disease. It's a rare degenerative disorder that shuts down nervous systems and limits movement. There's no known cause or cure. But unlike Parkinson's, medicine doesn't help control symptoms.
"Patients get even sicker," said Charles Ide, who studies MSA at Western Michigan University. "They lose the ability to regulate their heart rate, blood pressure, when they go to the bathroom - all of that goes out the window. "People stop swallowing. You can choke to death on your own saliva. It's a really horrible disease."
According to Versel, the disorder is about as common as ALS, but "everybody knows what ALS is because of Lou Gehrig and Stephen Hawking." Since there haven't been any high-profile MSA cases, few are aware of the disorder. Versel hopes his "Make Your Mark: MSA Awareness Tour" will change that.
The Lakeview-based journalist and his uncle will ride 850 miles to Washington, D.C., stopping along the way at towns touched by MSA.
In Kokomo, Ind., for example, there are three families impacted by the disorder. And MSA activists Frank and Susan Cervone live in Kettering, Ohio, where they'll host a pizza fundraiser.
Versel and his uncle hope to raise about $10,000 in all. Most of it will be donated to the MSA Coalition, but smaller donations will benefit local groups and university research. "I don't think this tour is going to cure MSA," Versel said. "But there are research trials underway that don't need millions of dollars. They just need a few thousand."
Versel said cycling became "kind of my therapy" after his father died, so it seemed like a natural fit for a fundraiser. He and his uncle will average about 80 miles a day, and stockpile chamois cream, which helps prevent saddle sores. The pair leaves Chicago on the Fourth of July and should end up in D.C. by July 14.
Versel said he's a bit worried about hitting hills after riding in Chicago for so long - but will look to his dad as inspiration.
"It's not about me. It's not about my uncle. It's about my dad's legacy and his memory," Versel said. "This is bigger than him. It's about a disease no one know anything about. There's no cure. There's no known cause. There's no effective treatment. It's a death sentence."
The "Make Your Mark: MSA Awareness Tour 2014" will have a kickoff fundraiser at Chuck's: A Kerry Simon Kitchen in the Hard Rock Hotel, 224 N. Michigan Ave. at 6 p.m. Wednesday. Chef Kerry Simon is an Evanston native who's been diagnosed with MSA. Part of the evening's proceeds will go to the MSA Coalition.
The bike ride kicks off Friday at 9 a.m. near Addison and Lake Shore Drive. To join a leg or donate, visit www.msatour.net.
Courtesy of DNAinfo Chicago