Weekly Updates! - June 12, 2026

Hey all! I have a few quick updates this week:

• Progress Through Community: the 2025 TBRS Community Annual Report!
  
  • We’re excited to share our 2025 Annual Report, highlighting a year of meaningful growth and impact across the TBRS Community.
    
    • Thanks to our incredible families, donors, and partners, we expanded family support programs, welcomed new community members, and reached hundreds through educational events and resources.
    • We continued to strengthen research efforts by growing the TBRS and DNMT3A Patient Registry and expanding tools that help researchers better understand TBRS and prepare for future treatments.
    • Updated clinical resources and educational materials are helping improve care, support earlier diagnosis, and increase awareness among healthcare providers.
  • This year also marked important progress in building the foundation for the future, including planning for expanded clinical care and research opportunities.
    
    • None of this work would be possible without our community—thank you for helping us advance research, support families, and move closer to better care for all individuals with TBRS.
  • Click here to read the full news story!

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• Friendly reminder to update your Patient Registry surveys!
  
  • Keeping your information up to date helps researchers better understand TBRS and ensures your experiences are accurately represented.
  • You can update your surveys anytime by signing in here:
    
    • Patient Registry Sign In
  • We especially encourage updates if there have been any changes for yourself or your loved one with TBRS, including:
    
    • New diagnoses
    • New or changing symptoms
    • Changes to medications or treatments
    • Recent surgeries or procedures
    • New testing (you’re welcome to upload results if you feel comfortable!)
  • Even small updates can make a big difference in advancing research and improving care for the TBRS community 

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

Kit Minor, CARE Manager