Weekly Updates! - September 26, 2025

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

• Upcoming event: Aortopathies and Genetic Overgrowth Syndromes with Dr. Shaine Morris – October 6, 2025

• • • We’re excited to announce that, for the first time, the Overgrowth Syndromes Alliance (OSA) Speaker Series will be open to families as well as researchers, clinicians, and advocacy leaders.
    • Join us on Monday, October 6 at 5 PM EDT for a special presentation by Dr. Shaine Morris on Aortopathies and Genetic Overgrowth Syndromes
      • This talk will provide valuable insights into how overgrowth conditions can impact the aorta, creating an opportunity for shared learning and collaboration across the community.
    • Families are warmly invited to attend and take part in this discussion alongside the scientific and medical community.
      • The event will be held virtually via Zoom.
    • Register today to secure your spot: https://givebutter.com/aorta

• Upcoming event: TBRS Friends and Family Support Group – October 25, 2025

• • • This event will take place Saturday, October 25, 2025 at 3:00 PM Eastern Time via Zoom
      • Here is the link to join:
      • https://us02web.zoom.us/j/84555449715
    • 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: Registration is Open for the 2026 TBRS Super Summit!

• • • We’re excited to announce that registration is now open for the 2026 TBRS Super Summit!
      • This year’s event will take place March 19–22 at the beautiful Morgan’s Wonderland Camp in San Antonio, Texas.
    • The Summit is our biggest gathering of the year, bringing together families, researchers, and clinicians to connect, learn, and work toward the future of TBRS care and research. From expert-led sessions to hands-on activities, it’s a weekend filled with knowledge, support, and lasting friendships.
      • Both in-person and virtual options are available, so everyone can take part—whether you’re joining us at the camp or tuning in from home.
    • Save the dates:
      • Family arrival: Thursday, March 19
      • Scientist/Researcher arrival: Wednesday, March 18
    • Stay tuned for more details about the schedule and speakers. We can’t wait to see you there!
    • Click here to register for the Super Summit!

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

Kit Church, CARE Manager