Hello. I hope everyone has had a great week. I have just a few updates this week:

• Upcoming: TBRS Friends and Family Support Group – June 21, 2025

• • This event will take place Saturday, June 21, 2025 at 2:00 PM Eastern Time via Zoom
    • Here is the link to join: https://us02web.zoom.us/j/7181674734?omn=83726556990
  • 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.

• Recap: Special Talk on Hematology & Oncology in TBRS – with Dr. Rachel Rau 

• • On Monday, we had a great presentation from Dr. Rachel Rau, where she discussed hematology and oncology considerations for individuals with Tatton Brown Rahman Syndrome (TBRS). 
  • This presentation was a valuable opportunity for families and patients to learn from an expert in the field and better understand the latest insights related to blood and cancer-related health concerns in TBRS.
    • If you missed the live event, I’ll post the recording soon on the Facebook group. You may also reach out to [email protected]

Thanks! Please reach out to me with any questions at [email protected]. Happy weekend!

Kit Church, CARE Manager