Race for Rare gets even bigger in its third year - Joubert Syndrome & Related Disorders Foundation
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You did it again.

You, the members of the Joubert Syndrome community, raised a whopping $28,700 by participating in our third annual Race for Rare, easily surpassing our $15,000 goal.

A few thank yous are in order.

Thank you to the record 343 people who registered for our virtual 5K, which took place on June 1 on streets, trails and treadmills throughout the United States and abroad. That’s up from 272 in 2018 and 147 in 2017.

Thank you to the many people who donated to those teams.

Thank you to the people and companies who sponsored the event.

And thank you to those participants who recruited entire teams of registrants and worked hard to attract donors and sponsors. Here are the top three teams from this year:

Team Meiers – $2,959






Just as they did in both 2017 and 2018, Cassie and Ty Meiers, whose son Jax has Joubert Syndrome, once again put together a huge Race for Rare team. They recruited 58 registered participants for a 5K at Lloyd Square Park in Glendive, Montana. They followed up the 5K with a sloppy joe lunch and a silent auction.







Team Old Bay – $1,224

Beirne Roose-Snyder, whose son Bayard has Joubert Syndrome, did what she described as an amazing, beautiful 5K through Stanley Park during a trip to Vancouver, Canada. “Thanks to everyone who makes up Bayard’s village and donated to the Joubert Syndrome Foundation for him!” she said.







Team Jack Slaybaugh – $1,215

Lindsey and Jes Slaybaugh, whose son Jack has Joubert Syndrome, hosted their 5K in Avery Park in Dublin, Ohio, near Columbus. But their team of 16 registered participants also included family members participating in other cities and states. “Everyone who participated in the race with us has been such a huge support through our journey with JS and we feel their love and encouragement constantly!”