Weekly Updates! - January 23, 2026

Just a few quick updates and reminders this week:

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• Kit’s Monthly Meeting Themes (Replacing Office Hours)
  
  • We’re replacing our weekly Office Hours with a new format: monthly themed 1:1 meetings with me.
  • Each month, I’ll highlight a specific TBRS-related topic and invite families to schedule a one-on-one meeting with me to talk about it — or about anything else that’s on your mind.
    
    • This month’s theme: The TBRS Biorepository
      
      • You’re welcome to sign up for a meeting specifically to discuss this month’s theme, but you’re not limited to it. 
      • Your meeting time can be used to ask questions, share ideas, or talk through any TBRS-related topic that matters to you. The theme is simply there to help spark conversation and make it easier to get started.
  • If you’d like to meet with me, you can choose a time that works for you using the scheduling link below. Once you select a time, we’ll meet one-on-one to connect and talk through your questions or interests.
    
    • This new format replaces our previous Office Hours and is designed to give families more flexibility and more focused time to connect.
  • Sign up here!

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• Only 4 Cabins left!  - Register TODAY for the 2026 TBRS Super Summit!
  
  • Cabins are quickly being filled for onsite stay at the 2026 TBRS Super Summit! Register today to guarantee your spot.
    
    • 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.

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

Kit Church, CARE Manager