Imagine having an insatiable appetite 24/7. And imagine your metabolism not counteracting the big meals you craved—even if you ran or stayed physically active.

Such is the case for Adam Lebeck, a 25-year-old from Hastings, Minnesota. Lebeck has Prader-Willi Syndrome (PWS), a genetic disorder that causes him to feel relentlessly hungry, regardless of what or how much he eats, while simultaneously slowing his metabolism. The syndrome also affects physical growth, cognitive function, and behavior, according to the Prader-Willi Syndrome Association website.

For the majority of the one in 15,000 people born with the disorder, PWS leads to morbid obesity. Lebeck was once on that track—six years ago he reached his peak weight of 345 pounds.

Then he found Stepping Out, a residential treatment facility in Hastings that helps people with PWS better manage their food intake and exercise. With the encouragement of the facility’s staff, Lebeck also started regularly running and lifting weights at the gym six years ago. Gradually, he shed the pounds until the scale read 145 pounds this year.

Last weekend marked a significant milestone in Lebeck’s journey to regain control of his life when he ran the Minnesota Half Marathon in St. Paul in 2:53.

“I felt really, really good,” Lebeck, who wore his race medal to the gym the following day, told Runner’s World Newswire. “I like running because it makes me feel good and proud of myself.”

Lebeck and the 14 other residents at Stepping Out—all of whom run and race regularly—are pretty rare with their running. Lebeck took the lead in attempting the half marathon.

“In the world of PWS, you will not find people who exercise much, and if they do, it’s not very intense,” said Theresa McGrath, the executive director of Stepping Out. “And you will not find anyone that runs.” Lebeck is the first person McGrath can recall running a race that long with PWS.

In fact, running is the cornerstone for treatment at the facility that was founded by McGrath’s mother, Bonny Bates, in 2000. When Bates’ other daughter, Laurie, was 28, Bates learned Laurie had PWS. Laurie was morbidly obese and had heart issues as well as diabetes.

“Around the same time, I got very involved with running personally,” Bates said. “It’s a great antidote for lots of things. I was in love with it. I thought, how can I put these two things together?”

Because those with PWS are strongly motivated by food, Bates thought it could also be a driving force to get her daughter active. She decided to try coaxing Laurie out for walks, encouraging her by promising a small snack as a reward when they were done.

“The brain of someone with PWS is telling them to sleep and gorge on food and not move around any more than is necessary,” McGrath added. “Bonnie figured out that food is the best motivator. We structure those calories around exercise.”

Soon the walks down the block became short jogs, which eventually turned into a routine of five runs per week. Laurie lost nearly 200 pounds in the process, and the success Bates found with her daughter spurred her to start Stepping Out.

“Bonnie wanted to focus on fitness because that was the most pressing medical issue,” McGrath said. “She wanted to prevent her daughter from dying too soon.”

Overcoming the symptoms of the disorder to run 13.1 miles is what makes Lebeck’s race that much more incredible, said McGrath. Other members at the facility regularly run 5Ks up to 10-milers.

“Once they start working out,” Bates sid, “and getting that fitness feeling, they get hooked on it.”

Lebeck is certainly “hooked” on running now. On race morning, McGrath said she thinks the staff who came out to support him was more nervous than he was. Lebeck said the hardest part was maintaining a nice and easy pace throughout the race.

Now Lebeck wants to complete a marathon, and his efforts have inspired a couple other runners at Stepping Out to try a half marathon next year.

“We’re so proud of Adam,” McGrath said. “It’s a lot of hard work, but it’s so worth the effort.”

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