Weekly Updates! - May 15, 2026

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

• Resource Highlight: Count Me In for TBRS, Regional Coordinators, and the TBRS Community Map!
  
  • Count Me In for TBRS is our global contact registry. This is a short, voluntary survey for individuals with TBRS and their families that helps us understand how many people are affected worldwide and where our community is located.
  • The information collected (like basic demographics and contact preferences) allows us to connect families, share updates about research and clinical trials, and better support the community.
    
    • All data is secure and only shared with permission.
  • This survey also plays a key role in advancing research by helping us: 
    
    • Estimate prevalence, 
    • Understand our global community, and 
    • Improve study recruitment and outreach efforts.
  • Stay connected locally! 
    
    • When you complete Count Me In for TBRS, we can connect you (if applicable) with a Regional Coordinator - a community member who helps welcome new families, shares local resources, and fosters connection between individuals and families in the same area.
  • Don’t forget the map! 
    
    • Families who complete Count Me In for TBRS can choose to be included on our interactive community map found on the TBRS Community website!
  • Participation only takes a few minutes and makes a meaningful impact. Click here to participate!

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• REMINDER: Help Us Celebrate Our 2026 TBRS Challenge Participants
  
  • We’re so excited to celebrate the amazing individuals and families taking part in this year’s TBRS Challenge! 
    
    • Each participant is helping raise awareness, build community, and support research.
    • Whether you’re walking, running, swimming, or creating your own challenge—your efforts truly matter and are helping move TBRS research forward.
  • Follow along, show your support, and learn more about our participants here: https://givebutter.com/2026TBRSChallenge
    
    • We are so grateful for everyone participating, supporting, and spreading the word—you are what makes this community so special 

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

Kit Minor, CARE Manager