Hello. I hope everyone has had a great week. Here are a few updates from this week:

• TBRS Registry → call for uploads
  • TBRS research and care have come so far — thanks to YOU and the data shared in the TBRS and DNMT3A Patient Registry.
  • Because of the information families have contributed, we’ve been able to:
    • Provide data for analysis by leading researchers and clinicians
    • Create the TBRS Fact Sheet
    • Develop the TBRS Cardiac Care and Surveillance Sheet
    • Develop the TBRS Blood and Cancer Sheet
    • Support scientific papers and clinical publications
    • Host talks in our Clinical Education and Outreach Series to share crucial updates with families and clinicians
  • Now we need your help again with a time-sensitive, specific call to upload reports and medical records to support TBRS and DNMT3A Research Projects.
  • If you only have time for a few uploads, please prioritize:
    • Neuropsychological evaluation and/or Psychological evaluation reports
    • Educational reports (OT, PT, speech, cognitive testing)
      • (It’s okay if they are not in English. Upload reports from throughout the years. The more the better!
  • Next level of priority:
    • Imaging reports (brain, heart, abdominal — MRI, MRA, ultrasound, echocardiogram, CT, etc)
    • EEG and EKG reports
    • Specialist reports
    • Growth charts
  • Upload or update your records securely here: https://tbrsregistry.iamrare.org/
    • We’re happy to meet with you on Zoom if you need help uploading. Just let us know.
    • Thank you for continuing to move TBRS research forward.

• Highlighting an Important Resource: Hidden Disabilities Sunflower Program
  • We want to share an incredible resource with our TBRS Community – the Hidden Disabilities Sunflower Program! 
  • This program was created to help individuals with non-visible conditions feel supported and recognized in public spaces. By wearing a Sunflower lanyard, badge, or accessory, you can discreetly signal to staff, service providers, and others that you or your loved one may need a little extra time, understanding, or assistance.
    • The Hidden Disabilities Sunflower initiative is widely recognized in airports, retail stores, hospitals, and many other locations across the U.S. and globally. It’s a powerful tool for creating awareness and promoting inclusion.
  • We’re proud to share that Tatton Brown Rahman Syndrome (TBRS) is listed among the conditions recognized in the program. This means families in our community can use the Sunflower as a way to advocate for understanding and accessibility when out and about.
    • To learn more or order Sunflower products for your family, visit: https://hdsunflower.com/us/.

Thanks! Please reach out to me with any questions at [email protected]. Happy weekend!

Kit Church, CARE Manager