Woodburn man with rare neurological disorder raising money for cure
Woodburn resident Jason Wolfer, 52, can no longer drive, run, or go about many of the daily activities that most people take for granted. He has ataxia, a rare neurological condition that affects balance, coordination, speech and actions requiring fine motor control.
Following his diagnosis 14 years ago, he's made it his mission to connect with other people with ataxia and to spread awareness about the disorder. He leads two support groups for people with ataxia, gives speeches about ataxia and disability, and is currently raising money for the National Ataxia Foundation through a fundraiser called 60 For 60, which challenges participants to walk 60 miles in a self-designated amount of time and to raise money through pledges.
Back in 2003, 38-year-old Wolfer first realized something might be wrong when spatial reasoning became challenging.
"I was not able to align myself when going through doorways. I was hitting my shoulders," Wolfer said. "At the time we didn't know what was just me being me, because I was always accident-prone."
He suspected the source of his balance and coordination troubles was an inner ear infection.
"I went to the family doctor thinking that, 'It's probably going to be a round of antibiotics and I'm going to be fine,'" he said. Instead, the family doctor referred Wolfer to a neurologist, who referred Wolfer to a specialist at Oregon Health & Science University to confirm the diagnosis: ataxia.
As is common among people with the disorder, Wolfer had never heard of ataxia before the diagnosis.
"I think probably 100 percent of the people I've talked to had never heard of it until either someone they knew or they themselves came down with it," Wolfer said. "It's not like MS (multiple sclerosis) or Parkinson's where most people have a general understanding of what you're talking about. Ataxia is so rare that people don't know what it is."
He said not knowing about ataxia before his diagnosis made it hard to cope. "At first I was very frustrated, very disillusioned," Wolfer said. "I felt like because the doctor told me it was a rare condition, I was now alone."
For nine years, he tried to get by without thinking too much about the disorder. Ataxia, which is degenerative, comes in many forms — some people with ataxia lose the ability to walk within months of their diagnosis, while some people, like Wolfer, can go a decade or more without needing a wheelchair.
However, in 2012, Wolfer's condition progressed to the point where it became challenging for him to do his work as the head custodian of a school district. He lost his job in 2012.
"I had lots of time on my hands," Wolfer said. That led him to find out more about his condition on the internet. Through his searches he learned about the National Ataxia Foundation and their support groups. He decided to try them out.
"Up to that point, I didn't even realize that I needed a support group, but once I joined a support group I really felt a kinship, and it really helps," Wolfer said.
Now, Wolfer is the leader of support groups in Albany and Portland, which meet either once a month or once every six weeks.
He's also garnered a loyal following through his blog, "My Life — A Journey, With Ataxia Along for the Ride," located at jasonwolfer.blogspot.com. There, he writes about his experiences with and thoughts about ataxia, with plenty of humor thrown in.
"I always look for a different side to stuff," Wolfer said of his writing. "I do get frustrated with myself but I try to laugh about anything and everything that I can. Make light of it, I guess."
And in March 2017, he gave a presentation at the National Ataxia Foundation's annual conference, which was in San Antonio. His presentation, titled "From Shattered to Strength," encouraged people to join support groups, connect with the ataxia community and share their stories.
And this summer, he's been chipping away at his goal to walk 60 miles to raise money for the National Ataxia Foundation. The fundraiser is in honor of the National Ataxia Foundation's 60th anniversary. The foundation's goal is to fund research to find a cure for the disorder, and to support people diagnosed with ataxia.
Each morning, Wolfer goes out with his walking stick, walking around his neighborhood a few miles at a time. He started on June 1, and as of July 17 has walked 48 miles. He's raised $6,061.55, surpassing his goal of $5,000.
"I wanted to be a support for the National Ataxia Foundation," Wolfer said. "I wanted to be a support for those who can't walk. I still can, and it's good for me to move."
To support Wolfer in his 60 For 60 challenge and follow his progress, go to his Ataxia Foundation donor page.