Lesley Ann Oslica

CONWAY -- Home is indeed where the heart is, but Lesley Oslica has two homes. One is a spacious French country-style manse in the Wellington neighborhood on the city's west side. The other is parked inside the two-story carriage house across the drive. Inside the first is the office with memorabilia and match prints of past Dancing With Our Stars fundraisers (and Neil Young's "Long May You Run" on the stereo); in the second is a couple of big captain's chairs, a full-service kitchen and bathroom and queen-size bed, and the memories of four women who pedaled their way from Oceanside, Calif., to Annapolis, Md., in the Race Across America.

These homes serve as command centers for Oslica to lead the Arkansas outpost of the Children's Tumor Foundation, and Oslica's heart, plainly speaking, belongs to it. On Sept. 10, the foundation hosts its eighth Dancing With Our Stars at the Little Rock Marriott downtown. The competition will be the culmination of a lot of back-bending rehearsals for contestants including gubernatorial first daughter Sarah Hutchinson Wengel; KATV, Channel 7's Matt Mershon; and scene-makers Natalie Rockefeller, Kirk Bradshaw and others.

It is the end of another extraordinary personal output from Oslica, who sometimes, like real heroes do, breaks down and weeps at the effort and the uncertainty. "She cries her heart out because, 'I don't know what I'm going to do' -- imagine, the whole event is totally on her shoulders. It's really just her. Everything," says board member and 2013 Mirror Ball trophy winner Rick Fleetwood.

"There's many different emotions that you experience working with Lesley on [Dancing With Our Stars]. There's the highs and the lows, but it's never, ever about anything other than it being a success."

In 2001, when she and husband Connie Oslica -- you'll be forgiven if you pronounce the name with a soft I and hard C, but it's actually oh-SLEET-suh -- sat with daughter Katie inside an Arkansas Children's Hospital waiting room, Lesley was newly returned from Shreveport, where Connie was an operations director for CenterPoint Energy. Most of her own career she'd been a research assistant at Stephens Inc.

She felt young at 36, and typical -- a pretty typical mom -- when her little girl looked up into her daddy's face in the waiting room and asked, "Am I going to be OK?" The easy, maternal response is, "Of course you are," but the facts didn't support it. For all of medical science's unfathomable diagnostic powers, the Oslicas' first pediatrician didn't know that Katie's cafe au lait spots (yes, that's what they're called) portended a very serious and inscrutable disease called neurofibromatosis.

Specialists at Children's initially thought the scans showed five critical brain tumors.

Waiting for results, "I was so sick for three hours," Lesley says.

When it was all over, the consensus was that they were not tumors but "high signal areas." The diagnosis was neurofibromatosis.

Neurofibromatosis is a genetic mutation that causes tumors to grow around nerve endings. According to the foundation, it affects one in 3,000 children with a spectrum of deformities ranging from small skin lesions to disfiguring skin growths. Tumors also can develop in the brain and spinal cord, but it isn't cancer exactly. Many with neurofibromatosis experience symptoms that are neurological in nature and typically do not end life but make it painful -- physically and socially -- and even impair cognitive development.

At various times throughout her childhood, Katie Oslica had MRIs every six months. She had a tumor develop in the middle of her kidney, suffered high blood pressure, scoliosis and other complications. She dodged optic gliomas (which can blind an eye) and disfiguring plexiform tumors and dermal fibromas.

In most ways, Katie is one of the fortunate ones. Schoolwork was her bete noir. While friends rushed off to sports practice or social activities, she slogged home for hours of review and catch-up. But there she found an assiduous mother, working toward her own college degree and determined to see her daughter graduate from high school on schedule. Lesley earned a bachelor's from St. Gregory's University in Shawnee, Okla., three years before Katie graduated from high school in 2010.

From the diagnosis to today, Oslica's life has diverged along two parallel tracks. One was to continue to be a mom, a stay-at-home one with one very specialized duty above all others. The other was less familiar if more emotionally detached: to become a nonprofit director.

Technically, Oslica is a volunteer -- she's not paid to head the foundation's state chapter -- but in truth her crusade is full time and deeply entrepreneurial. She's a development director (fundraiser), a communications officer, a researcher and medical liaison for other parents in the state, and an operations chief.

She has "the ability to talk to anyone," says Stephens Inc. senior vice president Kelley Wilkins. "She can talk to a child with a huge disability ... all the way to the most wealthy person" who might brighten the future of children with huge disabilities.

"It was a natural for her."

A natural for such a self-starter, but still, there was a learning curve.

After years of living with and learning about the disease, Lesley and Connie Oslica did something about it. In 2007, they joined a team of marathoners in Virginia Beach, Va. Neither had run a race before, but they did -- a half-marathon -- and raised a little money, met other proactive neurofibromatosis parents, then came home.

"We started to build our network," Connie Oslica says. "We didn't know we were doing that but that's what happened -- and we finished that race, the sag wagon bumping us in the rear end toward the end. ... That really initiated what we're doing today."

CATHEDRALS

Lesley Oslica is thinking about cathedrals.

Not the modern glass and steel cruciforms or even the brick English variety that dot the Episcopal universe, but the world-wonder Saxon types with scabrous spires and clerestory windows set inside ogival arches, the kind that employed three or four generations of a single stonemason line. The grandfather who moved the cornerstone into position would not have lived to see the cone of the highest spire placed -- perhaps his grandson would do that -- but still he set about his work.

This is how Oslica chooses to frame her current work.

"As far as a complete end to NF ... I say they've got 40 [more] years." She'd be 90 then, she says, then offers a quick little smile and a chin wag that suggests either possibility -- the cure, turning 90 -- is a craps throw.

Then, just as quickly, she snaps out of it. "Oh, my husband told me not to tell you anything negative."

The Oslicas' optimism is as much at their core as their Christian faith. It's no coincidence. "I think what we knew from Day One ... that all we could really do is put it in God's hands. We gave this up. 'OK, God, here it is, help us deal with this.' And really God put it back in our hands and said, 'Hey, here's some things you can do,'" says Connie Oslica.

Lesley Oslica estimates the Arkansas chapter of the Children's Tumor Foundation has raised $500,000 from gala fundraisers alone, $1 million total. (Some of those funds won national matching grants, so the total is more.)

Her Race Across America (RAAM) bicycling team in June raised about $80,000 (which will be matched by the Jim Bob and Lauree Moffett Family of Texas). That's Oslica, Hannah Turnbough of Conway, Julie Hathcock of Malvern and Texan Angela Earlee. Along with Connie Oslica and a support crew -- and the Winnebago command center, code-named "Gerdy" -- they were CrankNForaCure. More than fundraisers, they were a force -- prophets. They carried a mission cross-country.

"If physicians don't know about it" -- as hers didn't all those years ago -- "imagine our community! What I'm doing today [is driven by] just an intense desire for people to know about NF, because how I felt that day [of the diagnosis], I never want anybody to feel that. I was alone."

THE TWO-STEP

Starting a 501(c)3 is mostly bookkeeping -- a mission (set in writing), a governance board and a fund. Fundraising is the finesse game. Networking. Salesmanship. After all, every nonprofit has the same business model as every for-profit, that is, profit.

Lesley Oslica's first big event was a fashion show and cocktail party in fall 2008. Jamileh Kamran and Linda Rowe Thomas were there and Dr. Gregory Sharp and Bassem El-Nabbout were feted for founding the first neurofibromatosis clinic in the state (not a freestanding facility, the clinic comprises physicians' office hours dedicated to seeing neurofibromatosis patients within Children's Hospital). The chapter was just a year old, and the event raised $37,000.

Two years later, in part because a fashion show was too gendered -- "We lost half our audience because men just didn't want to stay for that, and there are so many fashion shows out there already." -- Oslica cooked up the idea for a benefit in the mold of ABC's Dancing With the Stars.

Since then, event fundraising expectations have jumped nearly 600 percent, to $200,000. One of this year's contestants, Natalie Rockefeller, was unusually candid about why she got involved. With twin 2-year-old boys at home, she and husband Win have to be frank with nonprofits. Here's what landed her: Fleetwood asked her to dance.

"I have no ballroom dancing skills whatsoever," she says, but he thought she'd be great, and now, she aims to prove it.

So someone inside her circle proposed she have fun. That was first. Second was Oslica herself -- convicted, tearful, a mom. Rockefeller ran her impressions past another friend. "I asked Daniel Robinson, is she for real? Is this really how she is? I hate to sound cynical, but was this just a really good sell [to get] me to be involved in this event?"

The third was that when Rockefeller said she'd sponsor two tables at the show -- one for her family and one for a neurofibromatosis family -- Oslica started crying. "She said no one had ever done that. I said I think it's important for these children and their families to see these people who do support them, and not just hear about the event afterward."

It all had the effect of investing Rockefeller in an effort for which she had no natural connection. Oslica "has this way of making you feel like it's going to be that much more successful with your involvement, and I think she's 100 percent genuine about it."

That the fight would be waged by such a salesman is poetic because the disease does itself no service. Sure, more children suffer from neurofibromatosis than Duchenne muscular dystrophy, cystic fibrosis and Huntington's disease combined, according to the foundation, but the story it has to sell is scattershot. Some sufferers have disfigured faces, but many grow inconspicuous skin lesions; some die from malignant cancer, but most live full lives, maybe with perplexing cognitive impairments or mild to moderate nerve damage.

"I have a hypothesis [about] why NF is so unknown," says Annette Bakker, chief scientific officer and president of the foundation, speaking from New York. The parents of these children aren't organized, and the reason that's so is "if their kid doesn't have a severe manifestation, parents don't want them lumped in with kids who do."

Oslica has found this out firsthand, carrying the message of the foundation into the hinterlands. "Quite frankly, if you just ignore it, if you keep your head in the sand, you don't have to face as many issues or think about it -- there aren't as many stings along the way."

On Sept. 10, a new Mirrorball Trophy will be handed out, but for all the world Oslica wishes it was a crystal ball -- what will the treatment for NF look like in 10 years? Is there a break in the case?

A pediatric neurologist at Children's Hospital's Neuroscience Center of Excellence says yes: "Repairing the genetic defect with gene-mediated therapy" looks like a comer to Sharp.

Like so many lifelong impairments, neurofibromatosis is the result of damaged genes, and the sequencing of the human genome 12 years ago promises dramatic new reconstructive therapies. "The whole metabolic genetics game is kind of mushrooming out of control -- in a good way," Sharp says.

"Maybe you don't get the stuff to go away that's already there, but maybe you prevent progression by altering the genetic mechanism."

High Profile on 08/16/2015