Weekly Updates! - January 10, 2025

Weekly Updates! - January 10, 2025

Hey everyone! I hope everyone had a great holiday season. Just a few updates and reminders from the TBRS Community:

• We’re launching our Drug Discovery and Repurposing Program and collecting patient samples!

• • • We're excited to announce that we're officially starting the first step of our Drug Discovery and Repurposing Program!
      • This project will help accelerate research and work toward better treatments for those affected by TBRS.
    • Here’s how YOU can help:
      • We are collecting nasal swabs from individuals with TBRS and a same-sex control (preferably a sibling, or a parent if a sibling is unavailable).
      • Swabs can be collected internationally, so families around the world can contribute!
    • Excited to participate? Fill out the form here: https://form.jotform.com/tbrsyndrome/tbrs-biorepository-donor-survey

• New Map of TBRS patient and family locations!
  • We have a new map that shows the general locations of TBRS patients and families, to show how our patients are globally spread and help others to see who might be in their area.
    • This map is different from the previous Facebook map. This map will be published on the website without names or specific addresses.
  • If you are interested in being included on this map, please consider completing our contact registry, Count Me In for TBRS!
    • Here is the full map!

Thanks! I hope you have a great weekend!Kit Church, CARE Manager