Blue Valley students raise their voices for ALS

Each year, the students at Overland Trail Middle School put on a musical that raises money for a charity, but this year, it was very personal for two of the student actors.

Maddie and Jake Willson, both 13, play some of the tiny townsfolk of Whoville in the school’s production of “Seussical,” but they stepped up in a big way to convince their classmates to select Project 5 for ALS as this year’s charity of choice.

Their dad, Bob Willson, founded it to support local research into the disease before he died of it five years ago.

“Every year, we let the cast and crew choose” the charity, said Kay Beth Shute, speech and drama teacher for the Blue Valley school.

The production last week raised about $3,800.

Shute said the charity aspect of the musical started about 20 years ago as a benefit to help the previous drama teacher, who had lost his house in a fire. Continuing that tradition presents an opportunity to teach the kids about more than drama skills.

“It’s a really fabulous group of kids. One of the things we really strive for is not just to help develop their character on stage but to help them develop their character off stage,” Shute said.

About 140 students in the seventh and eighth grades are involved in the production, both performing and running the technical aspects of the show.

Linda Willson was overwhelmed when she heard what her children had done.

“I didn’t know that my kids were going to stand up and make that request,” she said. “I didn’t know if they’d be capable of doing it. It’s still very emotional for them. … It’s overwhelming to see how (all) the kids have embraced the cause and this benefit and how they are all so vested in this performance and doing something so kind and generous for someone in their community.”

Initially, Jake wasn’t sure he wanted to be in the musical, because he hadn’t done it before, but as soon as he heard about the charity aspect of it, he told his mom, “I am so in.”

Bob Willson was a pharmaceutical representative when he got his diagnosis, and he looked into what research was being conducted at that time in 2007.

“He called it an orphan disease. The incidence is relatively low compared to (diseases such as) cancer, so big pharmaceutical companies weren’t investing a lot of money in it,” Linda Willson said.

He and his friend Richard Ehlers decided to found Project 5 to support “cutting-edge” research being conducted locally in Kansas City and St. Louis by people at the University of Kansas Medical Center and at Washington University.

“The ALS Association … is fabulous, and they helped us tremendously, but their purpose is not focused strictly on research for a cure,” Linda Willson said. “It is divided among research and advocacy and family support. A substantial part of their budget goes to improve the lives of people suffering with the disease.”

By earmarking funds specifically for research purposes, Bob Willson hoped to spur advancements more quickly.

Linda Willson said that in the years since Project 5 started, public awareness of ALS has really increased.

“The Ice Bucket Challenge was the single biggest thing that could have happened for the ALS community,” she said. “Prior to that, I don’t think anyone really knew what this disease was all about. … It was mentioned twice at the Oscars. That kind of commentary didn’t happen three years ago. Now, it’s part of the vernacular.”

That publicity also affected how her children could talk about their dad’s disease with people they knew.

“When my kids first started to see the videos about the Ice Bucket Challenge, they really couldn’t believe it. When kids at school and teachers (started talking about it), they felt that they weren’t alone in this anymore,” she said. “Even though our friends and family knew Bob had ALS, I don’t think a lot of people really knew what that meant.”

This story was originally published March 3, 2015 at 5:00 PM with the headline "Blue Valley students raise their voices for ALS."