Weekly Updates! - November 14, 2025

Hope everyone has had a great week. Only a few updates this week:

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• View the new TBRS Community website - and a new family 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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• Upcoming event: TBRS Friends and Family Support Group - November 20, 2025
  
  • This event will take place Thursday, November 20, 2025 at 7:00 PM Eastern Time via Zoom
    
    • Here is the link to join: 
    • https://us02web.zoom.us/j/85974821092
  • 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.

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• REMINDER: Tired of repeating your story? Now there’s an easier way.
  
  • AI Advocate (beta) puts your medical records and personalized answers in one secure place—helping you understand your care, spot what matters, and prepare for what’s next. 
  • Families who try AI Advocate before Nov 30 will automatically be entered into Citizen Health’s $5,000 Caregiver Recharge Giveaway.
  • Sign-up takes about 5 minutes
    
    • Unfortunately, Citizen Health is currently only able to pull records for families in the United States, but are working towards other countries in the future.

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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!

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

Kit Church, CARE Manager