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Behind Cupid's Undie Run lies a race to help a mother's son defeat disease

Neal Rubin
The Detroit News

Sheila Cohoon won't ask you to do anything she wouldn't do herself. So c'mon ... want to strip down to your underwear Saturday and trot through downtown Detroit?

She's the race director for the eighth annual Cupid's Undie Run, exposing some 400 good-hearted people to godawful cold and perhaps a touch of alcohol to help a good cause: defeating the disease that's threatening her young son, Nic.

She promised Nic she'll do whatever she can for him, even when she knows it's not enough. 

Nic, 10, is doing well, all things considered. "All things" means he has neurofibromatosis, and along with being responsible for the Undie Run, she's in charge of being honest about the disease with Nic and with herself.

Blindness, for instance, is still a possibility. Though it's an increasing long shot as he nears his early teens, tumors could settle on his optic nerves and squeeze them into uselessness. Or they could find his joints or his face or his brain.

Or, unlike his mom, they could sit idle. His neurofibromatosis (NF) is out of her hands, as much as she'd like to grasp it in her fingers and yank.

"As a mother, I can't take it away from him," she says. "That's a very difficult thing."

Nic Cohoon, 10, who has neurofibromatosis, with mother Sheila Cohoon, with her "End NF" arm tattoo, and dad Daryl Cohoon in their kitchen in Clinton Township home.

What she can do, and what she swears she always will, is let people know what neurofibromatosis does and how unsettlingly commonplace it is.

The accepted figure is one in every 3,000 births, which means it surfaces more frequently than Huntington's disease, cystic fibrosis and hereditary muscular dystrophy combined. Among the other local 1-in-3,000s, and local Nicks, is the 23-year-old son of Dan and Jennifer Gilbert.

Nick Gilbert has had multiple surgeries due to neurofibromatosis. His dad's cluster of companies in downtown Detroit was involved in some of the early Undie Runs, leading to as many as 1,200 intrepid sprinters a year.

The Gilberts remain “immensely supportive of the Cupid’s Undie Run," said Jennifer, even if they're no longer involved. "Our family appreciates any and all organizations that raise awareness of and support groundbreaking, cutting-edge research to accelerate a cure for neurofibromatosis.” 

More recently, the Gilberts have focused on their annual beNeFit gala, which has raised  $5.7 million across seven years.

Meanwhile, Cohoon, 49, has focused on doing the best she can without a business empire or a lab coat.

That means spending so much time taking Nic to therapy sessions that she lost her job at an auto supplier, and earning a real estate license in August so she can set her own hours.

It means planting a sign in the family's front yard with his face on it above the caption, "A fighter lives here!" It means a vanity plate on her GMC Acadia: IWLK4NF.

It means a neurofibromatosis wristband on her left arm, except she doesn't like to wear things on her wrists so it's actually a tattoo. Oh, and another tattoo on her shoulder: "NF Strong."

And, it means throwing open the doors at 11 a.m. Saturday at St. Andrews Hall, "so people can start getting undressed and start drinking."

Participants hit the streets for Cupid's Undie Run, a fundraiser to find a cure for neurofibromatosis, last year in Detroit.

Cupid's Undie Run began in 2010 in Washington, D.C., where three friends organized a chilly trot through the streets on behalf of the Children's Tumor Foundation (CTF).

Since people with neurofibromatosis can't always cover their lumps, bumps or deformities, the three gentlemen stripped to their underwear in solidarity.

The concept caught on, and 38 undie runs will take place this month from sea to shivering sea.

While every penny of net proceeds still goes to the CTF, says Denver-based executive director Amy Boulos, what's now Cupid's Charity split off in the early going because "they're the Children's Tumor Foundation, and this is the undie run. The brands just didn't align as neatly as things do in other organizations."

A Central Michigan alumna from Vandalia, Michigan, she has ambled in Denver and Chicago wearing her Cupid's underwear and socks.

"I can't actually run very fast," concedes Boulos, 49. Blame arthritic knees. But she doesn't have to run far: where marathoners have stickers in their car windows proclaiming "26.2," as in miles, the Cupid's stickers say "1-ish."

The route in Detroit measures 0.77 miles — west on Congress, south on Woodward, east on Jefferson, north on Beaubien and then a few yards back to St. Andrews for warmth, dancing and tales of derring-do.

Most runners will, in fact, venture forth in underwear. Others wear costumes. The four years Cohoon ran, she sported a tutu. She's seen Batgirls, Supermen and a consortium of pals dressed as the Village People.

It's $40 to participate, adults only, with the strong-arming of friends for donations encouraged and a total fundraising target of $43,000. If you don't mind risking an eye-roll before your welcoming pat on the back, you can just show up at 11 a.m. Saturday waving money. The sprint starts at 1 p.m., and most people will be back on the dance floor by 1:15 p.m.

Nic will be home in Clinton Township with his dad, Daryl, a head lab tech.

Maybe they'll go to the basement to play with Nic's impressive collection of Nerf guns. Maybe they’ll tinker with a car; he likes to help. Maybe he'll fiddle with his iPad — part tool, part toy, part therapy.

Neurofibromatosis has let him off comparatively easy. He has a few of the blotchy cafe au lait birthmarks that typically precede a diagnosis. His legs turn a bit inward, so he wears plastic ankle braces you can't see beneath his socks.

He deals with ADHD, a frequent manifestation of what Cohoon calls "the most common genetic disorder nobody's heard of," and the iPad keeps him focused and content during meals.

At school, he struggles with the orderliness of math but keeps pace with his fifth grade class. A checklist holds him on track in the morning: books in bag, hat/gloves, make lunch.

A sign in the Cohoon family's front yard salutes son Nic, who has neurofibromatosis. His parents, Sheila and Daryl, have made and shipped dozens of similar signs to the homes of other families, featuring those households' afflicted children.

"When I don't take my meds," he self-assesses, "I'm a little hyper."

He's much improved from three or four years ago when he'd still pitch full-on tantrums in grocery stores. Age helps.

So do goals. He wants to grow up to operate heavy machinery, ideally an excavator — "There's this one called the 750, and omigosh, is that bucket huge!"

Cohoon worries that as he ages, NF will cost him the vision and motor skills he’ll need to operate a 20-ton construction tool.

Encouragingly, "the less you’re affected early, the better it is," says neuro-oncologist Tobias Walbert, head of the multidisciplinary NF clinic at Henry Ford Health System. "But unfortunately, there are no guarantees, and things can still change later in life."

Nic has NF1, the most common of three strains. "The reality is," says Walbert, "many cases are so mild that the people who have it are unaware."

But another reality is that there’s no predicting when or how the genetic mutation might accelerate.

Cohoon ignores the notion as best she can.

"There’s no sense saying why or what if," she says. Obsessing doesn’t change anything now and it doesn’t shape the future.

"I wake up, my feet hit the floor and I start running," she says.

In her undies, if that’s what it takes.

Twitter: @nealrubin_dn