STXBP1 Awareness Month Really Got Moving in Germany

Written By Russ Novy

Team Jannek and almost 70 children met up with their parents in the Oberthal "Bike Arena" of the Mountain Biking Club on September 19, 2024.

This time, the occasion was "STXBP1 Awareness Month September 2024" in addition to the weekly bike training. The first chairman of the "Bergradler" association gave the kids and teens an amazing presentation about the impacts of STXBP1-RD and explained to them that some people have incurable conditions. To raise awareness of stxbp1 and appeal for donations for STXBP1-RD research to find a cure, the children and young people were given balloons with the letters STXBP1 on them. 

After the bike training session, they were permitted to take the balloons home. Finally, the children presented the balloons for a photo. Many thanks to the association Bergradler-Oberthal.de and to Gilberte Schnur for sharing this story.

Russ Novy
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