AUSTIN (KXAN) — Runners this weekend will strip down in order to step up.
Close to 100 teams are signed up for this year’s Cupid’s Undie Run in Austin, one of close to three dozen events like it happening across the U.S. throughout the month. They’ll strip down to their unmentionables (or whatever level of clothing they’re comfortable with) and jog a mile or so in downtown Austin.
“I never thought I’d put on an event like this and definitely didn’t think I’d be running around Austin in my undies,” Karen Rabon said. “I’m a mom; I’m a lawyer.”
Rabon said about 500 people are preparing to join the festivities this weekend, the sixth time she’s hosting it in central Texas. She hopes to collect about $90,000 from the fundraiser to support research into neurofibromatosis, or NF, a neurological disorder that commonly causes tumors on nerves and elsewhere in the body, and can cause blindness, disfigurement and even death. NF affects about one in 3,000 kids, and often causes learning disabilities.
“It’s really scary at first,” Jacob Stearns said. He and his wife, Lauren, spoke with KXAN as they played with their daughter Sylvie on a playground. The 5-year-old switched from swing to slide and back again faster than our camera could follow. “She’s, I’d say, a pretty normal 5-year-old.”
That’s a relief for the Stearns, who weren’t sure what to expect from Sylvie’s NF diagnosis at the age of four months. Her version of NF came with tibial dysplasia, a complication that prevents lower leg bones from developing properly. Sylvia wears a brace on her left leg now because the titanium rods doctors put in her shin at 16 months old might not be enough. “She’s had complete reconstructive surgery on that left leg,” Stearns said.
“The initial prognosis was that she wouldn’t be able to play on playgrounds or anything because there’d be a constant risk of fracture,” he said. “So that fact that she’s able to do this is kind of amazing for us.”
Sylvie is one of the kids Rabon hopes to help with her fundraising efforts. Cupid’s Undie Run started in 2010 in Washington, D.C., and she came across it when she was looking for ways to help seven years ago. That’s when she took her son Hayden, then 5, to the doctor to see if he had strep throat.
He did, but the doctor grew concerned about something else — spots on Hayden’s body, called cafe-au-lait spots. As the pediatrician ran tests, Rabon went home and Googled the brownish splotches she hadn’t had reason to question before then.
“That’s the first time I saw the word neurofibromatosis,” she said. The spots are often harmless birthmarks, but they can be an indicator of NF if there are a lot of them or if they’re particularly large. Hayden went back for an MRI.
“He had a tumor on his right optic nerve. He has another one behind his left ear,” Rabon said, sitting on the couch next to Hayden, who turns 12 on Sunday. “Knowing it was so common and I had never heard of it,” she said, pausing and turning to her son. “I know, I promised I wouldn’t cry.”
That’s when she started looking for a way to fund research. “When your child is diagnosed with something and the doctors say things like tumors growing on nerves, progressive, incurable, and unpredictable, then you do whatever it takes.”
She contacted the Cupid’s Undie Run founders and asked if she could bring it to Austin. The fundraiser is now in at least 30 cities in the U.S., plus several in Australia. Undie runs are also happening in Dallas and Houston this weekend.
Since the first run eight years ago, the organization has raised more than $14.5 million for research into NF.
This year’s party and run are happening Saturday from 12 to 4 p.m. at Buford’s Backyard Beer Garden in downtown Austin. It’s not too late to sign up to run; you can do so by clicking here or by stopping by Rogue Running downtown during packet pick-up from 10:30 a.m. to 5 p.m. Friday. You can donate to one of the Austin teams here, and sign up to volunteer at the event here.
Rabon is determined to keep holding the event “until we find a cure. And that’s around the corner, I’m convinced.”
The Stearns family certainly hopes so. Sylvie is managing her complications well right now, but she’s not out of danger. Her parents worry about what will happen as she progresses into adolescence. “That’s usually when things like the tumors start developing in full,” Stearns said.
“So it’s just kind of a wait-and-see at this point, and hope that they come up with better treatments and eventually find a cure.”