Weekly Updates! - September 19, 2025

Hello! I hope everyone has had a great week. I have a few updates this week:

• Registration is Open for the 2026 TBRS Super Summit!

• • • We’re excited to announce that registration is now open for the 2026 TBRS Super Summit!
      • 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.
    • Save the dates:
      • Family arrival: Thursday, March 19
      • Scientist/Researcher arrival: Wednesday, March 18
    • Stay tuned for more details about the schedule and speakers. We can’t wait to see you there!
    • Click here to register for the Super Summit!

• REMINDER: Special Call for Medical Reports in the TBRS Patient Registry
• • The TBRS Patient Registry is helping us track how TBRS evolves over time, find patterns between individuals, and move closer toward treatment development.
  • Multiple researchers are currently reviewing registry data for further studies.
  • We are now doing a special call for medical reports—please consider uploading these to the Patient Registry!
    • We’re especially prioritizing psychiatric, cognitive, and developmental testing records.
  • Office hours for support:
    • Mondays at 9:30 AM ET
    • Thursdays at 4:00 PM ET
    • Book private time with me here
  • How to upload reports:
    • Sign in to your account: tbrsregistry.iamrare.org
    • Click on the participant name
    • Click Pending Surveys
    • Scroll to the bottom and find “Genetic Tests, Imaging, and Medical Reports”
    • Retake this survey to upload reports
  • This is also a great time to update surveys if there have been any medication changes, surgeries, or new diagnoses.
  • View the TBRS Community Calendar for events and office hours.
  • Thank you to everyone who has already participated! Please reach out to me anytime: kit@tbrsyndrome.org

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

Kit Church, CARE Manager