Weekly Updates! - December 19, 2025

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

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• How a Grant from the Gordon Hartman Family Foundation Helped Our Community 
  
  • We’re excited to share how support from the Gordon Hartman Family Foundation helped us grow education, resources, and connection across the TBRS Community. Because of this funding, we were able to:
    
    • Host live, virtual education sessions on topics families ask about most—like heart health, cancer and leukemia risks, mosaicism, gene therapy research, and what TBRS looks like day-to-day for individuals and caregivers
    • Offer live translation and recorded sessions, so families could join in real time or watch later—no matter where they live or what their schedule looks like
    • Launch our redesigned TBRS Community website, making it easier to find up-to-date information, care guidance, and downloadable fact sheets to share with doctors, schools, and caregivers
    • Create TBRS Family Connect, a secure online space where families can connect with each other, share experiences, and feel less alone on this journey
  • We’re incredibly grateful for this support—and proud of what it’s helped us build together.

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• TBRS Community Office Hours are continuing — and we’re adding something new in the new year! 
  
  • What are Office Hours?
    
    • A casual, welcoming space to connect with the TBRS Community team
    • Join to ask questions, share ideas, or just listen in
  • What’s new in the new year? Weekly themes!
  • Starting in the new year, each Office Hours session will have a weekly theme to help guide conversation. Themes may include:
    
    • The TBRS Summit
    • The Patient Registry
    • Count Me In for TBRS!
    • And other community programs, research updates, or opportunities to get involved
  • How themes will work:
    
    • You’re welcome to join specifically to talk about the theme
    • You can also bring unrelated questions or topics — the theme is there to help spark conversation, not limit it
  • Office Hours are for you and your family, whether you have big questions, small updates, or just want to stay connected. 
    
    • Click here to view the TBRS Calendar and the next date for office hours!
      
      • Every Monday at 9am EST and Thursday at 4pm EST

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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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• 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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Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. Also: I won't be posting next week, but will return with Weekly Updates on January 2! Happy holidays!

Kit Church, CARE Manager

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