Weekly Updates! - February 7, 2025

Weekly Updates! - February 7, 2025

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

• • REMINDER: Our Regional Coordinator program has launched!
    • Regional Coordinators are volunteers located across the globe who are responsible for sharing TBRS Community programming and research information with their region, coordinating events and meet-ups for the area, and ensuring that all TBRS families are receiving the support they need.
      • For more information on this role, please visit the TBRS Volunteer form (page 6).
    • Please complete this quick 3 question survey if you are interested in being connected with your Regional Coordinator.
    • If you are interested in becoming a Regional Coordinator, it's not too late to join!
      • Please reach out to me at kit@tbrsyndrome.org

• REMINDER: 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

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