Weekly Updates! - February 16, 2024

Weekly Updates! - February 16, 2024

Hello all! Here are my updates from this week:

• New Family Welcome Packet
  • We are currently working on a welcome packet that will be given to new families that join our community, as well as current families.
  • This packet is almost finished, so look out for more information as it will be available soon!
• Changes to the TBRS Patient Registry
  • As we are making changes to the registry, there are a few surveys we are hoping to add:
    • The PEHLS seizure survey
      • I have reached out to a few families who have experienced seizures for input on this survey
    • Sleep survey
      • A lot of individuals with TBRS seem to have issues with sleep beyond sleep apnea, so including this survey will help us to gather more information on sleep issues with TBRS.
  • We have also developed a “Frequently Asked Questions” page for the Patient Registry, which should help answer some questions about the registry for new participants, and those who have not logged on in a while.
  • If you have not participated in the TBRS Patient Registry, click here to join!
• 10th anniversary of TBRS
  • TBRS was first discovered in Spring of 2014. As such, we are approaching the 10th anniversary of the discovery of TBRS.
  • We will be planning some special events to take place this Spring to celebrate the anniversary.
    • Details will be available soon!

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