Weekly Updates! - February 9, 2024

Weekly Updates! - February 9, 2024

Hello all! Here are my updates from this week:

• TBRS Collaborator needs Registry data!
  • We have a researcher working on a project using both Biorepository samples and Registry data.
  • This project will help in diagnosis and clinical understanding of TBRS.
    • If you donated to the Biorepository and have not completed the Patient Registry, please consider registering in the next few weeks!
    • I will be reaching out directly to families who donated to the Biorepository and did not complete the Patient Registry in the coming weeks as a reminder of this project.
• Regional Coordinator Meeting
  • We had our first Regional Coordinator meeting on Monday, February 5, 2024.
  • We discussed some important topics, including:
    • How to use resources in an area to support the Community
    • How to better involve non-English speaking members of the Community
    • How Regional Coordination might best benefit every Region where we have TBRS families!
  • If you are interested in becoming a Regional Coordinator, please reach out to me at kit@tbrsyndrome.org
• EVENT: Special Needs Future Planning Coaching Session
  • A series of meetings to help coach our community on special needs planning. Come hear about resources available and get support from other caregivers who are going through the same process. All are welcome.
  • Monday, February 12, 4:00-5:00 PM EST. Register here.
• EVENT: New Family Meet-Up
  • Newly diagnosed families are encouraged to join our Executive Director and TBRS Parent, Jill Kiernan. Learn the newest TBRS-related information, hear about upcoming events, and find out more about programs the TBRS Community has to offer.
  • Friday, March 8, 4:00-5:00 PM EST. Register here

Thank you, and I hope everyone has a great weekend!Kit Church, Research Coordinator