Weekly Updates! - June 20, 2025

Weekly Updates! - June 20, 2025

Hello. I hope everyone has had a great week. Here are a few updates from this week:

• TOMORROW: 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.

• Upcoming: “Understanding Mosaicism in TBRS” with Sarah Waldvogel, MD/PhD student at Baylor College of Medicine
• • • This event will take place Monday, June 23, 2025 at 4:00 pm EST via Zoom
      • Register here: https://givebutter.com/mosaicism
    • Mosaicism happens when only some of a person’s cells carry the TBRS genetic change, and it can affect inheritance, how symptoms appear, and how it is diagnosed.
    • Sarah has been studying mosaicism in TBRS and will break down what it is, what she’s discovered, and why it matters—for families, clinicians, and the future of TBRS care.

• New Videos on Our YouTube Channel!
  • • We’ve just added two new videos to the TBRS Community YouTube channel!
      • Gene Therapy Considerations for TBRS
      • Hematology and Oncology Considerations in TBRS
    • These videos are recordings from recent presentations. They are designed to help families better understand current research and clinical thinking around these important topics.
    • You can find these and other helpful videos—covering everything from overgrowth syndromes to registry updates—on our YouTube channel anytime.
• We’ve partnered with Unite Us, offering support services for our US-based families!
• • Need help finding support services in your area? We’ve partnered with Unite Us, a social service platform that helps connect people in the United States with local resources.
  • These resources include: benefits and insurance support, mental health care, housing and utility assistance, food and transportation services, education and employment support, and more!
  • U.S. families can now access this support through our new Unite Us link—just follow the instructions and select “Request Local Support Resources (US only).”
    • https://tbrsyndrome.org/find-support/
    • Don’t forget to scroll to the bottom to submit!
  • Outside the U.S.? Reach out to your Regional Coordinator or contact Kit Church at kit@tbrsyndrome.org—we’re here to help you find what you need, wherever you are.

Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. Happy weekend!Kit Church, CARE Manager