Weekly Updates! - March 28, 2025

Weekly Updates! - March 28, 2025

Hello. I hope everyone has had a great week. I have a few updates to share:

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

• • • We have officially launched the 2025 TBRS Exercise Challenge! Register before Tuesday, April 1 to participate!
      • 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 kit@tbrsyndrome.org.

• 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.

• UPDATE: Upcoming TBRS Conference in Spain!

• • The TBRS Spanish association is hosting a Conference in Spain!
    • I previously posted the incorrect dates: it will be held Friday, April 11 - Sunday, April 13, 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 a few weeks!

Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org.Kit Church, CARE Manager