Victoria Davis
Emily Tseffos with her father-in-law, Nick (left) as folks take their clothes off to raise awareness of neurofibromatosis.
After two hours of drinking and dancing to Cyndi Lauper’s “Girls Just Want to Have Fun” and other sing-along ear candy, 50 skimpily clad runners file out of Whiskey Jacks Saloon on State Street into the wintery, Midwestern air.
Costumes for Cupid’s Undie Run crew range from angel wings (and little else) to Wonder Woman onesies, American flag bras, skimpy caveman garments, and undies that read “I take my pants off for charity.” The goal on this Saturday afternoon is to run three-fourths of a mile up State Street and loop around downtown to raise funds to combat neurofibromatosis (NF).
“It’s a giant party that’s a lot of fun, with people who are directly affected by this disease — parents of children with NF, patients affected with NF and also people who are just out to have a good time,” says Emily Tseffos, the race director for Madison’s first-ever Cupid’s Undie Run. “This fundraiser has tapped into a whole other side of the NF community, one that celebrates and honors the physical challenges folks with NF are dealing with. I appreciate that Cupid’s does this in a light-hearted manner.”
The Cupid’s Undie Run is a 10-year-old charity fundraiser, started by Washington, D.C., locals Brendan Hanrahan, Chad Leathers and Bobby Gill. After Chad’s brother, Drew, was diagnosed with NF at the age of 16, the three men decided to run through the city in their underwear in February to raise money and awareness for the condition. It’s a genetic disorder that causes painful tumors to grow on nerve tissue and makes it difficult for those affected to feel comfortable in clothes, so the “just undies” concept isn’t just a gimmick, it underlines the problem sufferers face.
The majority of tumors grow between the thighs and shoulders “so to put even a T-shirt on is very uncomfortable,” says Jacqui Borgmann, a volunteer at Madison’s Undie Run who used to nanny for a boy with the disease. “They have to walk around all the time in their underwear because it hurts to have a shirt on. So we can handle a day in the cold for a couple hours.”
At Whiskey Jacks, site of the pre- and post-run party, sheer red hearts dangle from the bar table. Glittery pink centerpieces, in true Valentine’s spirit, complete the ambiance. The group is selling apparel: T-shirts that read “Lead with Love,” and heart-patterned panties with the Cupid’s Undie Run cherub logo. Tseffos, in boxer briefs and red boa, greets race participants at the front of the saloon, while her parents-in-law, Karen and Nick, are in the back managing panty sales.
“My son was diagnosed with NF two years ago,” says Tseffos of 2-and-a-half-year-old Nico. “My family and I have been tapping into all the things we could tap into as far as raising funds and that’s how we got into this fun world of undie running. Nico is our ‘why’ for being willing to freeze our buns off running around Madison.”
The disease has been “in the closet” for a long time, says Nick Tseffos, Nico’s grandfather. “A lot of people associate it with The Elephant Man,” he adds, referring to the motion picture about a greatly deformed man in 19th century London. “He had a different disease, but that [preconception] is what a lot of these kids face.” Instead of families hiding in embarrassment, the Cupid’s Run encourages NF people “to come out and run with us and have fun.”
“The idea of running around in your underwear might be a little strange, but no one is forcing you to strip,” says Tami Cleary, a long-time friend of Emily Tseffos. “That’s why you see all these costumes. It’s just about getting out of your comfort zone since that’s how people with NF feel all the time.”
Tseffos, holding a megaphone that reads, “I’m with Cupid,” announces the start of the race. A mass of smiling, shivering, half-naked bodies are released onto State Street, with Tseffos and Cleary bringing up the rear.
This year, Madison’s Cupid’s Undie Run raised $7,640 so far, with 100 percent of proceeds going to the Children’s Tumor Foundation in New York. Donations for the Cupid’s Undie Run are being accepted until Feb. 29.
“It doesn’t matter if you have zero connection to NF,” says Tseffos. “It’s a good time with music and drinks and community and you get to run around in February in your underwear. I’m looking forward to next year.” She hopes to quadruple the number of participants.
More than 30 cities: Where the Cupid’s Run fundraiser is now hosted.
$18 million: Funds raised nationally for neurofibromatosis research.
Before age 10: When symptoms for neurofibromatosis often develop.
Cure? There is no cure for neurofibromatosis, only ways to manage tumor growth.
Prognosis: Though the condition worsens with age, patients with neurofibromatosis tend to have normal life expectancies.
