There are no coincidences when it comes to bringing people together in the Austin FC universe. Last year, during the initial Laundry Project charity event hosted by Brad and Ashley Stuver in Austin, the Verde goalkeeper’s wife reached out to supporter Kerry Tillery in an unexpected way.
“Brad wants to talk to you after the event is done,” Ashley Stuver said.
She had been following Tillery on Instagram, and immediately gravitated toward her posts about Chiari malformation, a brain condition Tillery suffers from that causes splitting headaches and blurred vision, often leaving her bedridden for days at a time.
Brad Stuver had learned about the condition through family friend Cathy Poznik and wanted to invite Tillery to a charity event happening later that month.
Friday Oct. 7th, come on out to @HopsquadBrewing for a charity event benefiting @bobbyjonescsf. @brad_stuver will be hanging out from 6-8pm while we have a few beers & raise money for a great cause! Staying later? At 9pm there will be a screening of the documentary Pasión Verde! pic.twitter.com/GrJWJ4T7I7
— Kerry (@Kerry_Pro) September 22, 2022
Fast-forward a little more than a year and Tillery is now teaming with the Stuvers and Pozniks to raise awareness for the little-known condition with an event Friday night at HopSquad from 6-8 p.m., followed by a live showing of the documentary, “Pasión Verde.”
“My life was kinda starting to pick up again and treatments were starting to give me some progress, and then out of nowhere comes Brad and Ashley and this charity they're part of that just so happens to be the exact thing that has kind of ended and then restarted my life,” Tillery said. “It still blows my mind.”
Even more mind-blowing is that the connection between the Stuvers and Tillerys was initially made through a 53-day social media campaign launched by Kerry’s husband, Brad Tillery, to #ReleaseTheKit worn by Ashley’s husband, Brad Stuver.
Kerry was a lot of the brainpower behind the series of silly videos that eventually led to Austin FC releasing the Verde goalkeeper kit at the Verde Store.
But at the same time, Kerry Tillery’s brain was fighting against her well-being. Chiari malformation is caused when a part of the skull is either misshapen or is smaller than normal, causing part of the brain to extend into the spinal canal.
Tillery’s form is called a “low-pressure Chiari,” caused by a spinal fluid leak that drains spinal fluid away from her brain, making it sag into her spinal canal.
“The surgery that I had last year probably got me about 30% relief, but even like today, I've been on upright for about three hours and that's about my limit,” she said on Wednesday. “I'm gonna have to wait to let my spinal fluid replenish itself, and then I can stand up again.
“Sometimes it’s opposite. Most people have high-pressure Chiari and they are super uncomfortable laying flat and more comfortable upright. They have to constantly take medicine to decrease their spinal fluid pressure. It's a game of catch-up all the time of balancing medicine and kind of finding where your balance point is. You have to learn to cope with it.”
Which is where events like Friday’s come in as a way to raise awareness and much-needed funds for research. Funds raised with go toward the Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF), whose mission is to raise awareness and find a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders.
The disorder is somewhat common but often goes undiagnosed, like it did for multiple years in Kerry Tillery's case. Even for those like Cathy Poznik’s sons who are diagnosed early, treatments can be cumbersome. Oldest son Calvin Poznik has had 23 surgeries to relieve pressure.
On Friday night, the Tillerys, Pozniks and Stuvers will come together for a new spin on their “Unite At Night” events, which will include a raffle for a paddle board as well as a portion of beer sales going toward the foundation. More details and a link to donate can be found here.
“For this, I was like, let's do this Austin Style,” Kerry Tillery said. “Thankfully she trusts me with the event. She’s let the Stuvers take the reins on it before and do kickball. We’re just going to to a hangout. I don’t know that we were gonna get a bunch of people to register to walk, but we're going to definitely get a lot of people to show up to drink.”