Weekly Updates! - January 30, 2026

Just a few quick updates and reminders this week:

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• Research Opportunity!: 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.
    
    • This study includes a two-day visit each year (for at least 3 years) to St. Louis Children’s Hospital, where participants will meet with doctors and specialists from different fields.
  • At this stage, 10 participants will be selected, but all families are encouraged to apply. The research team will choose the most appropriate participants, and the study may expand in the future.
  • Applications are due by February 13, 2026.
    
    • You can apply using this link.
    • Questions can be sent to jill@tbrsyndrome.org.

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• Research Opportunity!: Help Advance Mental Health Research in TBRS
  
  • Families often ask how they can help TBRS research →  this is one important way to contribute!
  • If your child or loved one with TBRS has had neuropsychiatric, developmental, or school-based evaluations (such as speech, OT, PT, learning, psychological, autism, or ADHD assessments), we encourage you to share these reports with us.
    
    • These documents help researchers better understand how TBRS affects mental health, behavior, learning, and development, and they strengthen future research for families now and in the future.
    • Sharing reports is optional, secure, and even older evaluations are helpful.
  • 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!

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• Research Opportunity!: Lets learn more about bone health in TBRS!
  
  • We are partnering with Dr. Vicken Totten, a parent of a person with TBRS, on an IRB-approved 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.
  • This research will help doctors better understand how TBRS affects bones and may improve care, screening, and treatment for our community.
    
    • The study is for diagnosed individuals and families, is survey-only, and does not require travel.
  • You can participate by using this link
    
    • Every response helps improve understanding of bone health in TBRS and supports future research.

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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 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