Taylor Gustafson was born with Chiari malformation, a neurological disorder that left her legally blind and often in a wheelchair. And it's because of her close personal ties to the affliction that she's involved with Conquer Chiari, a national nonprofit organization that provides education, research and awareness about the disease.
In an effort to support its work, the organization hosts an annual Conquer Chiari Walk Across America. This year, the Oregon segment of the walk will be in Lake Oswego's own back yard.
Registration will begin at 8:30 a.m. Saturday, Sept. 25, with the walk starting at 10 a.m. at George Rogers Park, 611 S. State St.
"Anyone is invited, whether you know what Chiari is, whether you don't, whether you're impacted by it or not," said Gustafson, the Oregon representative in charge of organizing the Oregon Walk Across America. "Anybody and everybody is welcome."
Chiari is a disorder where the back part of the brain comes out of the skull and places pressure on the spine and brain stem.
"It can cause a wide array of symptoms including headaches, neck pain, balance problems, weakness, respiratory problems, visual difficulties. It actually affects more than 300,000 people … but it affects all people of all ages and race," Gustafson said. "Patients often go five to 10 years before being diagnosed because it is a rare condition. We actually don't have a lot of neurosurgeons in the area that are willing to treat it so we often have to travel for treatment."
Gustafson said those with Chiari often undergo brain surgery to provide symptom relief. Recently, Gustafson added, she had to visit New York just to see a neurosurgeon.
Since it began in 2008, Conquer Chiari Walk Across America has raised more than $5.5 million for research and other patient programs, according to a press release.
The Oregon walks were previously held in Salem, but as a resident of the Portland area, Gustafson wanted to host it closer to home.
"I like Lake Oswego because they're kind of a tighter-knit community and kind of rally around their community itself," Gustafson said. "(Lake Oswego is) very inclusive and diverse and it just all around is an accepting place."
The walk will travel the path along the water at George Rogers Park for a quarter-mile before turning around and coming back to the park. If people wish to walk longer, or to not walk at all, they have those options. The event is free, though the organization is asking for $40 donations.
There will also be $1 raffle tickets available for prizes, including gift cards, winery tours, dog-friendly baskets and sporting tickets. The proceeds will go toward the nonprofit.
"We're practicing safety and COVID mandates and stuff like that, but it's open to everyone and we're just looking to have a good time and raise awareness," Gustafson said. "The biggest thing is finding the community. There is a community out there of us and it's rare. There's a wide variety. Some people are really impacted by it — I'm actually legally blind because of it and I use a wheelchair about 25% to 50% of the time because of balance issues. Then there's others that are really well managed and live day-to-day pretty well."
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