Weekly Updates! - March 21, 2025

Weekly Updates! - March 21, 2025

Hello everyone, and happy Spring (Northern Hemisphere) or Fall (Southern Hemisphere)! I have a few updates this week:

• Read our first ever IMPACT REPORT now!

• • • We’re excited to share our first-ever Impact Report, showcasing the incredible progress we’ve made over the years!
      • This report highlights all of our accomplishments, from groundbreaking research to global advocacy
      • The report also shows the power of patient-driven efforts, and how much we can do together.
    • Click here to read the full report and see how your support has fueled real change!

• 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 kit@tbrsyndrome.org.

• 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.

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