Hey everyone! I hope everyone had a great week. Just a few updates and reminders from the TBRS Community:

• Official launch of our new and improved Patient Registry!
• • • We have been working to update our Patient Registry for some time now, and are excited to announce that we will be launching next week! 
      • Our goal with this new registry is to collect data more efficiently and make it easier for families to complete!
      • Some of the other changes included in our new registry are  using standardized surveys, adding Heyn Sproul Jackson Syndrome to our Registry (HESJAS is a different syndrome also caused by the DNMT3A gene), and translating the Registry into other languages.
    • To prepare for the launch of the new platform, we have paused the current Patient Registry. Until we launch next week, YOU WILL NOT BE ABLE TO ACCESS YOUR REGISTRY ACCOUNT. 
      • Once we have launched, you will receive an email with instructions to continue with the new Registry. 
      • Please email me with any questions! [email protected]

• REMINDER: Our Regional Coordinator program has launched!
• • Regional Coordinators are volunteers located across the globe who are responsible for sharing TBRS Community programming and research information with their region, coordinating events and meet-ups for the area, and ensuring that all TBRS families are receiving the support they need.
    • For more information on this role, please visit the TBRS Volunteer form (page 6).
  • Please complete this quick 3 question survey if you are interested in being connected with your Regional Coordinator.
  • If you are interested in becoming a Regional Coordinator, it’s not too late to join! 
    • Please reach out to me at [email protected]

• REMINDER: We’re launching our Drug Discovery and Repurposing Program and collecting patient samples! 

• • • We’re excited to announce that we’re officially starting the first step of our Drug Discovery and Repurposing Program! 
      • This project will help accelerate research and work toward better treatments for those affected by TBRS.
    • Here’s how YOU can help:
      • We are collecting nasal swabs from individuals with TBRS and a same-sex control (preferably a sibling, or a parent if a sibling is unavailable). 
    • Swabs can be collected internationally, so families around the world can contribute!
      • Excited to participate? Fill out the form here: https://form.jotform.com/tbrsyndrome/tbrs-biorepository-donor-survey

Thanks! I hope you have a great weekend!

Kit Church, CARE Manager