Fight against Huntington’s disease rolls on for Shana Verstegen

Much has changed for Shana Verstegen since I last interviewed her seven years ago.

She’s now a mom, with sons ages 6 and 3. Verstegen herself is 41, and maybe not winning as many log rolling championships on the world stage as she once did, although she’s still highly competitive — the third ranked woman in the United States Log Rolling Association.

One part of her life has not changed.

The last thing Verstegen said to me when we spoke in July 2014 was that despite some news she had just received, her lifelong commitment to fighting Huntington’s disease — which took her mother’s life in 2013 — would be undiminished.

Huntington’s is a fatal genetic disorder that attacks both physical and mental abilities. Those afflicted usually show symptoms between ages 30 and 40. Verstegen was 5 when her mother, Debby Martin, was diagnosed.

Among the disease’s cruelties is that every child of a parent with Huntington’s has a 50-50 chance of inheriting the fatal gene.

Verstegen, who grew up in Madison and is the longtime fitness director at Supreme Health & Fitness on Odana Road, had helped her dad, George Martin, care for her mom as Debby’s conditioned worsened. Verstegen became an advocate for Huntington’s education and research, serving as president of the Wisconsin chapter of the Huntington’s Disease Society of America.

Verstegen never wanted to take the blood test that would reveal whether she had the Huntington’s gene. She was going to live life fully, prepared to deal with whatever came.

But that was when she was Shana Martin. In November 2013, Shana — she pronounces it “Shawna” — married Peter Verstegen, a personal trainer and massage therapist at Supreme whom she’d known since high school. “You know you’ve made it in life,” she once told me, chuckling, “when you marry a massage therapist.”

More seriously, Verstegen said, “After I got married, it was no longer just me.” There were important decisions to consider — family planning, insurance — and together she and Peter decided she should take the blood test after all. A 50-50 proposition.

The test showed that she did not have the Huntington’s gene.

Of course they wept, tears of joy, when they got the news in the genetics counselor’s office. But when I interviewed Verstegen not long after, she said her efforts to combat Huntington’s would not abate.

“I am not going to stop,” she said, “because I got the lucky side of the coin.”

She has not stopped.

Verstegen is serving as event coordinator for the Madison Team Hope Walk/Run on Sunday, Aug. 15, at 10 a.m. at McKee Farms Park. It’s part of the national Huntington’s Disease Society of America’s fundraising effort in more than 100 cities. The Madison event will include food, music, a silent auction and more.

“It’s a really, really fun day,” Verstegen said, when I caught up with her again recently.

I asked about her continued involvement.

“Huntington’s has been part of most of my life,” Verstegen says. “As awful a thing as it was, it gave me a purpose. It brought me together with this community of the strongest, most amazing and wonderful people I’ve ever met. These people became a second family to me.

“I met so many wonderful people,” she says, “and as predicted when we were all kids, half of us were going to get sick and half of us weren’t. That’s what’s happening right now. I got the lucky side of the coin and I’m living this amazing life with these beautiful children and so many great adventures that could very well not have happened if my test went the other direction.”

She continues: “Meanwhile, I’m watching people who I’ve been so close with for the past 30 years, moving into nursing homes, trying to find caregivers, trying to have long term care plans. I feel a sense of obligation and purpose to keep fighting.

“Plus the memory of my mom keeps me going as well. Every time I do any kind of Huntington’s event it reminds me of my mom and how she was always 100 percent involved with everything. It’s a wonderful way to honor her. And selfishly, it feels good to help others and do good things. It helps us feel like we’re making a difference in the world.”

The Madison event will combine Verstegen’s passion for both Huntington’s advocacy and physical fitness. The latter started early, too. Her parents enrolled her in a log rolling class at the YMCA before she was a teenager. Today she gives lessons through her company, Madison Log Rolling, and as noted, travels to competitions.

Shana Verstegen (left) competes at Three Rivers Roleo in July 2021.

“Having the boys in the stands cheering, ‘Go, Mommy!’ is very motivating,” she says.

The Huntington’s community took “a big punch to the stomach” earlier this year, Verstegen says, when a trial for a highly promising drug treatment was discontinued.

“We were filled with so much hope,” Verstegen says. “It was a huge blow. But it doesn’t mean there aren’t things to be hopeful about. It means we have to work in overdrive to continue studying other options and promising treatments.”