Weekly Updates! - February 13, 2026

Just one update this week, as well as a few reminders:

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• Virtual Science Day Update
  
  • This week, the TBRS Community hosted a Virtual Science Day, bringing together researchers and clinicians from around the world to talk about ongoing TBRS research and future directions.
  • Scientists shared updates on their current projects and discussed how different areas of research connect to one another.
  • The focus of the day was on better understanding TBRS and identifying promising pathways that could eventually lead to treatments and improved care.
    
    • While much of what was discussed is still in early stages and not yet published, these conversations are an important step in moving TBRS research forward.
  • This meeting also served as a preview of what’s ahead at the TBRS Summit:
    
    • On the Scientific Day of the Summit (before families arrive), researchers will meet again.
    • They will break into working groups to explore different strategies toward treatments and next steps for TBRS research.
  • We’re encouraged by the level of collaboration and shared commitment to the TBRS community and look forward to continuing this work at the Summit.

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• REMINDER: Only 2 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.
    • Register here!

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• REMINDER: 4 Great Research Opportunities!: 
  
  • Help Advance Mental Health Research in TBRS
    
    • A researcher is looking for neuropsychiatric, developmental, or school-based evaluations (such as speech, OT, PT, learning, psychological, autism, or ADHD assessments) to evaluate psychiatric symptoms in TBRS.
    • Reports can be uploaded to the TBRS Patient Registry or emailed to kit@tbrsyndrome.org to upload
      
      • Please upload or email reports by February 10th!
  • Sign up to participate in an ongoing, in-person Natural History Study
    
    • The TBRS Community and Washington University School of Medicine in St. Louis are launching a new Natural History Study to learn more about how TBRS changes over time.
    • Applications are due by February 13, 2026.
      
      • You can apply using this link.
      • Questions can be sent to jill@tbrsyndrome.org.
  • Need for EKGs and Echos for a heart study
    
    • One study is requesting Electrocardiograms (ECG or EKG) & Echocardiograms (Echo) to address heart concerns in TBRS.
    • Reports can be uploaded to the TBRS Patient Registry or emailed to kit@tbrsyndrome.org to upload
  • Lets learn more about bone health in TBRS!
    
    • Dr. Vicken Totten, a parent of a person with TBRS, is conducting a research study about bone health in people with Tatton Brown Rahman syndrome (TBRS).
      
      • If your child or loved one has a TBRS diagnosis, you can help by completing a short survey about bone-related concerns such as fractures, pain, or other bone issues.
      • Participate by using this link

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

Kit Church, CARE Manager