• Megann Horstead

Downers Grove students ‘Dance Off’ rare diseases


Students at Kingsley Elementary School danced with a purpose during the third annual “Dance Off Disease” fundraiser.

The event was held Feb. 29 and is an effort to support individuals living with rare diseases by letting students cut loose with dances like the cha-cha slide, chicken dance and even a round of limbo.

Kingsley’s student council organized the event to coincide with Rare Disease Day.

Millions of people around the world have rare diseases, which are defined by 200,000 or fewer cases.

Student council sponsor Ashley Bidlencik said holding the event works well for a number of reasons.

“I’m an old dance instructor, so I thought it would make sense to hold the event,” she said.

Throughout the afternoon, each class at Kingsley School spent 15 minutes dancing in the campus’ multipurpose room.

“My sixth graders know the dances,” Bidlencik said. “A lot of the dances are taught in gym classes.”

Lily Myszak, 12, was one of the Bidlencik’s students leading the other children in the dances.

She said the time spent giving back to the community for a good cause is enjoyable, but added that it’s just really fun to get away from class work and dance with your friends.

“I really like to dance,” she said. “It’s fun. Me and my family have dance parties at home.”

Donations were being accepted at the time of the event and would benefit the Global Genes Project – a leading global advocate for rare and genetic disease patients—and Noah’s Hope – an organization raising funds for treatment and a cure for Batten disease.

The latter is a terminal illness where there is currently no cure.

Noah’s Hope was started by Downers Grove parents Jennifer and Tracy VanHoutan. Their two children – 11-year-old Noah and 10-year-old Laine – are battling LINCL-Batten disease.

The rare disease causes people to lose their speech, balance and mobility, according to the Noah’s Hope website (http://www.noahshope.com/).

On average, Dance Off Disease brings in about $600-700, according to its organizers. This year, Kingsley School set its fundraising goal at $600.

On behalf of the Global Genes Project, students wore “gene” ribbons in support of the cause.

Bidlencik said the hope is that more people will gain a greater understanding for rare diseases and the challenges those diagnosed face.

“It helps to spread awareness because it’s not like cancer,” she said. “By passing out the ribbons, they hope to spread awareness for rare diseases.”

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