Weekly Updates! - December 12, 2025

Hello! I hope that everyone has had a great week. I have a few exciting updates this week:

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• TBRS Community has received funding from the Patient-Centered Outcomes Research Institute!
  
  • We’re pleased to announce that TBRS Community has been selected for Patient-Centered Outcomes Research Institute funding through its Eugene Washington PCORI Engagement Award Program! 
    
    • This project will help develop a skilled community of patients, caregivers, clinicians and other stakeholders who are better equipped to engage as partners in all phases of patient-centered research!
    • It will go to support research at our TBRS Summit in 2026!

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• REMINDER: Registration is Open for the 2026 TBRS Super Summit!
  
  • We’re excited to announce that registration is now open for the 2026 TBRS Super Summit! 
    
    • This year’s event will take place March 19–22 at the beautiful Morgan’s Wonderland Camp in San Antonio, Texas.
  • The Summit is our biggest gathering of the year, bringing together families, researchers, and clinicians to connect, learn, and work toward the future of TBRS care and research. From expert-led sessions to hands-on activities, it’s a weekend filled with knowledge, support, and lasting friendships.
    
    • Both in-person and virtual options are available, so everyone can take part—whether you’re joining us at the camp or tuning in from home.
  • Save the dates:
    
    • Family arrival: Thursday, March 19
    • Scientist/Researcher arrival: Wednesday, March 18
  • Stay tuned for more details about the schedule and speakers. We can’t wait to see you there!
  • Click here for more information!

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• Don’t forget to sign up for TBRS Family Connect - our new social platform!
  
  • We launched a brand-new website and TBRS Family Connect, our online community made just for TBRS patients, families, and caregivers.
    
    • TBRS Family Connect works a lot like our Facebook groups, but the big difference is that it’s run by the TBRS community and not on social media.
    • This gives families a way to stay connected even if they don’t use Facebook.
  • If you use TBRS Family Connect on a web browser, you can translate the whole space into your language, which makes it easier for everyone to chat together.
    
    • Translation doesn’t work in the Circles phone app yet
  • We’d love for you to hop in, look around, say hello, or share a question or story—your presence helps make the space better for everyone.
  • Click the link to sign up!: https://tbrsyndrome.org/tbrs-connect-signup

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Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. Happy holidays!

Kit Church, CARE Manager