Weekly Updates! - October 25, 2024

Weekly Updates! - October 25, 2024

Hey everyone! I hope everyone has had a great week. Here are some TBRS Community updates and reminders for this week:

• TBRS Community Postcard Exchange

• • • The TBRS Postcard Exchange involved families from around the world sending postcards to one another.
      • It was all about spreading joy, and each card was a special reminder that we’re all part of a supportive community.

• • • • 35 families participated in this event!

• • • We loved seeing everyone get involved, and we’re already looking forward to the next exchange! Thanks to Jane Hatton for organizing!
    • Click here to read the full story and see pictures!

• TOMORROW: TBRS Friends and Family Support Group - October 26, 2024

• • • This event will take place Saturday, October 26, 2024 at 3:00 PM Eastern Time via Zoom
      • Here is the link to join: https://us02web.zoom.us/j/7181674734?omn=87976765302
    • 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.

• REMINDER: Looking for volunteers to translate TBRS Community materials!

• • As a part of our global initiative for TBRS, we are looking for volunteers to translate TBRS materials, like:
    • TBRS Community New Family Welcome Packet
    • Count Me In for TBRS
    • Patient Priority Survey
  • Having these materials in other languages will increase accessibility for many patients and families with TBRS worldwide!
  • We welcome translations in any language, though our largest focuses include:
    • French
    • German
    • Chinese
  • If you are available to translate any TBRS Community resource into another language, please consider volunteering! Reach out to kit@tbrsyndrome.org!

Thanks and I hope you have a great weekend!

Kit Church, CARE Manager