Weekly Updates! - February 20, 2026

Just one update this week, as well as a quick reminder:

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• FINAL REMINDER: Only 1 Cabin 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.
    • Register here!

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• 4 great opportunities to participate in research at the TBRS Summit: 
  
  • Biorepository donation (Less than 1 hour)
    
    • The diagnosed individual (and both parents, if applicable) donate blood and saliva. 
    • These samples are stored for TBRS research and help scientists better understand TBRS at a biological level.
  • Neuropsychiatric evaluation (~ 2 hours)
    
    • A clinical evaluation of the diagnosed individual conducted by pediatric neurologist Jacqueline Harris. 
    • This helps researchers better understand the neuropsychiatric features of TBRS.
  • Patient priorities project
    
    • A TBRS Community study to collect experiences, priorities, and symptom information primarily from diagnosed individuals, mosaic individuals, and caregivers.
    • Breaks are allowed, and caregivers may accompany diagnosed individuals if helpful.
    • There are 2 formats
      
      • 1:1 interviews (30-60 minutes) - Diagnosed individuals only (accompanied by caregiver if necessary).
      • Focus groups (75 minutes) - to be conducted during large, planned breaks in the schedule
  • EEG (1 hour)
    
    • EEGs will be performed at the Summit and added to a research repository to support future TBRS research, particularly related to brain activity and neurological features.
  • If you are interested in participating in any of these research opportunities at the TBRS Summit this March, please reach out!

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

Kit Church, CARE Manager