Cherokee man running in his undies for CTF

SALINA, Okla.  – When it comes to raising awareness about Neurofibromatosis (NF), some people feel clothing is optional.

Showing a little skin is all worth it for Jerry Willman, Cherokee, who is getting ready to disrobe and participate in a Cupid’s Undie Run on Feb. 15 in Austin, Texas.

Since 2010, thousands of people have raised eyebrows and awareness about NF by shedding their clothes and thundering through the streets in nothing but their underwear. The Cupid’s Undie Run began in Washington, DC and is now held in 27 U.S. cities and three Australian cities each February.

This will be Willman’s first time to participate in a Cupid’s Undie Run. However, he’s no stranger to other NF fundraisers or what NF can do to people. Willman was diagnosed with NF1 at 17, when he was a senior in high school. He wanted to join the Navy, but after going through a physical exam, he found out he had NF and was ineligible to enlist.

The underwear run is a fundraiser for the Children’s Tumor Foundation (CTF). The idea for the run began when Chad Leathers found out his brother Drew was diagnosed with NF. Chad and his friends Brendan Hanrahan and Bobby Gill created the event to support research.

“Kids with NF have to overcome challenges on a daily basis,” Chad Leathers stated. “This event puts people in an uncomfortable situation while putting some hilarity in charity.”

NF is a genetic disorder that can lead to learning disabilities, blindness, deafness, chronic pain and cancer. With NF, tumors can grow along nerves throughout a person’s body. There are three types of NF: NF1, also called von Recklinghausen NF or Peripheral NF; NF2 also called Bilateral Acoustic NF (BAN), and Schwannomatosis.

“I’m the only one in my family with it,” Willman said. “(I’ve received) Great support from my mom and dad, while they were still here,” along with support from his siblings.

According to the CTF web site, Neurofibromatosis affects more than 2 million people worldwide, making  it more common than cystic fibrosis, Duchene muscular dystrophy and Huntington’s disease combined. Each form can be inherited from a parent with NF or be from a “spontaneous mutation” in the sperm or egg cell. NF affects both sexes equally without regard to race, ethnicity or geographic location.  Once, NF was thought to be the “Elephant Man’s Disease,” but scientists now believe that disease is the Proteus Syndrome.

May is NF Awareness Month, and this year will mark the fourth annual Tulsa Children’s Tumor Foundation 5K Walk on May 17, at La Fortune Park in Tulsa. Willman has participated in this walk.

He said in the last 15 years he’s been involved with raising awareness about NF by meeting with people in-person or online through his Myspace and Facebook pages. He knows children with NF and said, “They help keep me going. Most of them have dealt with it more than I have.”

Willman said he didn’t understand NF when he was diagnosed and there was not a lot of research at the time, so his advice is to ask.

Willman set a goal to raise $450 for the Cupid’s Undie run and has a donation page at: http://hopecur.com/TEAMKNOTTY. He states on the page that no child should have to go through NF. “…I am running in my undies in the freezing cold because I will do whatever it takes, no matter how ridiculous, to help find a cure for NF!”

He wants to wear the names of people who have or had NF. He’s shooting for 3,000 names. Anyone who has a name to add to his list can submit it through his donation page or find him on Facebook.

 

Cherokee Nation citizen Jerry Willman carries one of his inspirations to walk during the 2012 NF 5K Walk in Tulsa, Okla. Willman will be showing a little skin this Saturday, Feb. 15, in Austin, Texas, when he participates  in Cupid’s Undie Run.

 COURTESY PHOTO