Weekly Updates! - May 9, 2025

Weekly Updates! - May 9, 2025

Hello. I hope everyone has had a great week. I have a few updates to share:

• Recap: TBRS Disease Impact presentation

• • • On Wednesday, May 7, Mylie, a graduate student in Genetic Counseling who recently completed a Disease Concept Model for Tatton Brown Rahman Syndrome (TBRS), presented her findings to the TBRS Community!
      • There was a great turn out, with over 40 families registered for live attendance!
    • This presentation highlighted the real-life impacts of TBRS on individuals and families, as captured through interviews and research.
      • If you missed this presentation, the recording can be found on the TBRS Community private Facebook page
      • Please do not share this video publicly. Researchers are typically hesitant to share unpublished data, so we ask that this information not be published publicly to encourage researchers to continue to trust our families and share back data with us.

• NEW: Dutch translations available for many TBRS Community resources!
  • Many thanks to our Regional Coordinator for the Netherlands, Nathalie de Lange, for translating many TBRS Community materials into Dutch!
    • These resources are now available in Dutch:
      • Count Me In for TBRS
      • Patient Priority Survey
      • TBRS Baseball card
      • New Family Welcome Packet
    • Coming soon:
      • Overgrowth Syndromes Alliance brochure
  • Many thanks again to Nathalie, and all of our Regional Coordinators, for all of the hard work they do!

• SAVE THE DATE: 2026 TBRS Summit
  • The TBRS Summit is planned for early 2026!
    • WHEN: Weekend of March 21, 2026
    • WHERE: Morgan’s Wonderland Camp in San Antonio, TX, USA
  • The TBRS Summit is where the magic happens—families, researchers, and clinicians come together to connect, learn, and push forward the future of TBRS care and research.
    • Stay tuned for more details, including registration and agenda updates!

Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. Happy weekend!Kit Church, CARE Manager