Weekly Updates! - February 6, 2026

Just a few quick updates and reminders this week:

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• 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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• Only 3 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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Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. 

Kit Church, CARE Manager