Race for Rare 2017 Recap - Joubert Syndrome & Related Disorders Foundation
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By Chuck Soder

The 2017 Race for RARE raised roughly $10,000 for the Joubert Syndrome and Related Disorders Foundation – far more than organizers had anticipated.

Exactly 147 runners and walkers registered for the virtual 5K race – “virtual” because it didn’t take place at one particular location. Participants laced up wherever they happened to be on Oct. 7 and hit the road to raise money and awareness.

Meghann Rutledge said she and fellow race organizer Jenni Swenson didn’t expect nearly that many people to register. After all, this was the first time the Joubert Syndrome and Related Disorders Foundation had ever hosted a virtual 5k.

“Jenni was like, ‘Let’s get 50 runners.’ I was like, ‘no, we can do a hundred. Then we got 147,’ ” Meghann said.

The Meiers family did their part to help push that number up.

Like some other JS families, Cassie and Ty Meiers recruited family and friends to join their race in Glendive, Montana. A total of 41 people, most of whom were officially registered, showed up to support them and their son Jax, who has Joubert Syndrome. Jax walked the last block in his gait trainer.

“It was so nice to spread JS awareness through our small community as Jax’s diagnosis is still fairly new,” Cassie said via email. “Ty, Jax, and I plan to do it again next year and try to increase participation through more advertising. It warms my heart to be able to give back to the foundation and JS family that welcomed us with open arms when we got Jax’s diagnosis.”

They also hosted a free-will donation lunch afterward and even recruited two sponsors: WBI Energy and Dakota Diesel. The race also was sponsored by Kasey Stevens Fitness and Parker County Grafix, a Texas company that gave the foundation a discount on T-shirts given to registrants, who also will be receiving race medals through the mail.

And yes, Race for RARE – a name chosen because Joubert Syndrome is one of roughly 7,000 known rare diseases – will come back next year, according to Meghann Rutledge. Organizers learned a lot putting together the first event and expect the next one to be even bigger.

“We would love to double our participation,” Meghann said. “Double or triple it. Triple. Put triple.”



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