Weekly Updates! - August 7, 2026

Hey all! Just a few, quick updates this week:

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• Did You Contribute to the TBRS Biorepository? - you might have pending tasks!
  
  • If you contributed a sample to the TBRS Biorepository, please log in to Matrix and complete the Vineland survey.
    
    • You can access Matrix here: https://combinedbrain.acrossmatrix.com/
  • We know the Vineland is a long and involved survey, and we really appreciate you taking the time to complete it or upload a recent copy!
    
    • If you have already completed a Vineland in the last 6 months, you can upload a copy instead of completing the survey again.
  • This information helps researchers better understand how TBRS affects people in their everyday lives. 

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• Upcoming event: TBRS Friends and Family Support Group - August 29, 2026
  
  • This event will take place Saturday, August 29, 2026 at 3:00 PM Eastern Time via Zoom
    
    • Information and link to follow
  • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
  • Any parents or caregivers of someone diagnosed with TBRS are welcome.

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• Connect With Families in Your Area!
  
  • Did you know the TBRS Community has a Regional Coordination program?
    
    • Our Regional Coordinators are members of the TBRS Community who help connect families in their area. They can help families find local connections, share resources, and even organize meet-ups!
  • If you would like to meet other TBRS families near you, make sure you have completed Count Me In for TBRS.
    
    • Count Me In helps us know where families are located so we can help connect people in the same area.
    • You can complete or update Count Me In here: https://form.jotform.com/222376155482155
  • We’d love to help you find your TBRS neighbors! 

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

Kit Minor, CARE Manager