Weekly Updates! - June 27, 2025

Weekly Updates! - June 27, 2025

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

• Recap: “Understanding Mosaicism in TBRS” with Sarah Waldvogel, MD/PhD student at Baylor College of Medicine

• • • On Monday, June 23, Dr. Waldvogel presented on her work on mosaicism in TBS
      • She 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.
    • If you missed the live event, I’ll post the recording on the Facebook group this afternoon. It will also be posted to the TBRS Community YouTube channel next week!
      • You may also reach out to kit@tbrsyndrome.org for the recording.

• Recap: Gene Therapy Considerations in TBRS presentation

• • • On Friday, May 23, Dr. Harrison Gabel presented on the latest advancements in TBRS gene therapy research
      • A recording of Dr. Gabel’s presentation can now be found on YouTube.
    • Additionally, our own Dr. Vicken Totten has developed a lay summary of the presentation, should families prefer to read about the presentation.

• 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