Tonawanda News — When Agnes Starr was diagnosed with chiari in 2008, after years of dealing with debilitating pain, she didn’t know much about the brain disorder.
“I started researching, but then I found out, there isn’t much research out there,” she said.
Although more than 300,000 people have the disorder in the United States, many haven’t even heard of it. The condition consists of the protrusion of the brain through the base of the skull. The malformation causes a variety of symptoms, including pain, headaches, dizziness, respiratory problems and even paralysis.
“Only 30,000 people in the country have cystic fibrosis, but so many more people know about that,” Starr said. “I figured, awareness has to start somewhere.”
So in 2010, Starr and a family friend, Denise Amanti, organized the first local Conquer Chiari Walk Across America in Ellicott Creek Park. This year’s walk is set for Saturday, as part of 61 coordinated events across the county on the same day.
“The money from the walks has gone toward the creation of a treatment facility for the disorder in Akron, Ohio,” Starr said.
More than 200 people are already signed up for the one-mile walk in the park, and those interested in taking part can register Saturday morning, as well. Registration begins at 11 a.m. and the walk begins at 1 p.m., and a minimum $25 donation is requested.
The event will also include live music by Hair Nation and Turbulence. A DJ from Signature Entertainment will also be at the walk, and there are plenty of activities for children, as well, including face painting, balloon animals and an appearance from Spongebob Squarepants.
Dr. Lee Guterman from Buffalo Neurosurgery Group will act as the guest speaker, and the organizers have hundreds of gift certificates and baskets to raffle off.
All proceeds from the walk will fund research through Conquer Chiari. Last year, the walks raised more than $535,000.
Starr said she and Amanti work almost year-round to organize the event. She works through the headaches she describes as “brain freezes” and the pain she endures when physically exerting herself.
But for Starr, the work is worth it.
“There is evidence that chiari is hereditary and just the thought that my daughter might have to one day endure what I go through on a daily basis is the driving force behind me organizing these walks,” she said.
Amanti’s brother has also been diagnosed with the disorder, and to relieve his symptoms, he underwent a successful brain surgery — one of the only treatments available for chiari patients.
“I took care of him for seven years, and I saw him go through a lot of pain,” she said. “It has been a rough battle.”
For more information about the disorder and the walks, visit conquerchiari.org.
Contact reporter Jessica Bagley at 693-1000 ext. 4150, or follow her on Twitter @JessicaLBagley.IF YOU GO • WHAT: Conquer Chiari Walk Across America event • WHY: To raise money for the brain disorder • WHEN: Registration at 11 a.m., walk at 1 p.m., Saturday • WHERE: Ellicott Creek Park, Town of Tonawanda