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A rare disease changed his life. Now an Ada bike ride is raising awareness
PrevNextRare disease changed his life. Now an Ada bike ride is raising awareness
By:Cassandra Alonso
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ADA TOWNSHIP, Mich. — Most mornings, many people move from one task to the next without much thought. But for someone living with multiple system atrophy, those everyday moments can become some of life’s biggest challenges
One local man is sharing his story ahead of a charity bike ride raising money to support those diagnosed with the disease
From Active Lifestyle to Diagnosis
Just about a year ago, Jack Walen was leading an active lifestyle
“A few months before I started having symptoms. I mean, I was riding my bike 40 or 50 miles a day, and snow shoeing, and cross-country skiing, and hiking with the dogs, and backpacking, and chopping wood,” Walen said
Walen began having symptoms in late 2024. After months of testing involving scans, nuclear medicine tests and biopsies, he was diagnosed with multiple system atrophy, or MSA — a rare neurological disease that progressively affects movement, balance and other body functions
According to Mission MSA, it is often misdiagnosed as other neurodegenerative diseases, like Parkinson’s disease, due to some overlapping symptoms, making early and accurate diagnosis a challenge for healthcare professionals
There is no known cure
Rapid Progression Changes Everything
The progression has been rapid
“I started using trekking poles and a cane January of this year. Progressed through a walker and now in a wheelchair for the past couple of months,” Walen said
The hikes, long bike rides and time outdoors that once filled his days have largely been replaced by doctor’s appointments, rehabilitation and adapting to a new way of life
“I can’t take the dogs for a hike and can’t do normal things outdoors, I think that decreased activity because of the MSA is the biggest issue for me,” Walen said
Walen now lives in an assisted living center in Lowell
Rare disease changed his life. Now an Ada bike ride is raising awareness
A Disease Many Haven’t Heard Of
Before his diagnosis, he had never heard of MSA
“I think most people don’t know anything about MSA. I didn’t know anything about it until I researched it after the diagnosis,” Walen said
Raising Awareness Through Cycling
The lack of awareness is exactly what organizers of the Grand River Ride to End MSA hope to change
Chuck Scholten, one of the event organizers, said the idea started with an email from his brother sharing news about their friend’s diagnosis
“When we start talking about this, and just the realization sets in that nobody has heard of multiple system atrophy. Nobody knows MSA,” Scholten said
Event Details
The event will take place Saturday, Aug. 29, at Ada Park. Cyclists can choose from four routes ranging from 10 to 100 miles
For more information about the event or to register, click here
Supporting Research and Patients
The ride will raise money for Mission MSA, a national organization that supports research and re
“It’s something I never expected from my friends to pull this together, and yet here they are,” Walen said
For Walen, raising awareness could make all the difference
“Early diagnosis is important. We don’t have effective treatment yet, but there will be some day,” Walen said
This story was initially reported by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy
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