Weekly Updates! - February 28, 2025

Weekly Updates! - February 28, 2025

Happy Rare Disease Day! I hope everyone had a great week. Just a few updates and reminders from the TBRS Community:

• TBRS Exercise Challenge 2025!!

• • In honor of Rare Disease Day, we have officially launched the 2025 TBRS Exercise Challenge!
  • To register, visit the TBRS Exercise Challenge website and click “join team”
    • Here you can sign up and create your team for the challenge!
  • Anyone can participate in the challenge - and all of the funds raised go to improving the Patient Registry and making data more easily accessible for research!
  • If you have any questions or need help setting up your team, please contact me at kit@tbrsyndrome.org.

• REMINDER: Relaunch of the TBRS Baseball Card
  • In honor of Rare Disease Day (February 28), we are relaunching the TBRS Baseball Card!
  • The TBRS Baseball Card (aka the TBRS Trading Card) is a resource with personalized information about a TBRS patient that caregivers can share with clinicians and other support professionals!
    • This resource has been translated into German, Spanish, and Japanese!
      • Dutch coming soon!
    • Click here for more information or to request your own card.

• REMINDER: Our Regional Coordinator program has launched!
  • Regional Coordinators are volunteers located across the globe who are responsible for sharing TBRS Community programming and research information with their region, coordinating events and meet-ups for the area, and ensuring that all TBRS families are receiving the support they need.
    • For more information on this role, please visit the TBRS Volunteer form (page 6).
  • Please complete this quick 3 question survey if you are interested in being connected with your Regional Coordinator - or complete Count Me In for TBRS if you have not already!
  • If you are interested in becoming a Regional Coordinator, it's not too late to join!
    • Please reach out to me at kit@tbrsyndrome.org

Thanks! I will be out of the office next week, so please email all urgent questions to jill@tbrsyndrome.org. Otherwise, I will respond on Monday, March 10. I hope you have a great weekend!

Kit Church, CARE Manager