Hello everyone! I’m happy to be back, and I hope everyone has had a great couple of weeks. I have a few updates this week:

• Join the TBRS Exercise Challenge 2025 before it’s too late!!

• • • We have officially launched the 2025 TBRS Exercise Challenge! 
      • Through this challenge, individuals with TBRS commit to a daily exercise of their choice in exchange for pledges and donations to the TBRS Community. This presents an exciting fundraising opportunity while encouraging healthy practices for individuals with TBRS.
      • In March, individuals can sign up for the Challenge and begin collecting pledges. The Challenge takes place throughout the month of April!
    • 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 [email protected].

• Upcoming TBRS Conference in Spain!

• • • The TBRS Spanish association is hosting a Conference in Spain from Friday, March 21 – Sunday, March 23, 2025. 
      • This will be hosted by the TBRS Spain community, Asociación Española de Síndrome de Tatton Brown Rahman.
    • I will provide an update on the conference in 2 weeks!

• Upcoming: TBRS Friends and Family Support Group – March 30, 2025

• • This event will take place Sunday, March 30, 2025 at 2:00 PM Eastern Time via Zoom
    • Here is the link to join: https://us02web.zoom.us/j/7181674734?omn=82420366473
  • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
  • Any parents or caregivers of someone diagnosed with TBRS are welcome. 

• REMINDER: Relaunch of the TBRS Baseball Card 

• • In honor of Rare Disease Day (February 28), we have relaunched 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. The idea is to help teach those who work with the TBRS patient more about them and their symptoms.
    • This resource has been translated into German, Spanish, and Japanese!
      • Dutch coming soon!
    • Click here for more information or to request your own card.

Thanks! Please reach out to me with any questions at [email protected].

Kit Church, CARE Manager