Weekly Updates! - February 14, 2025
Hey everyone! I hope everyone had a great week. Just a few updates and reminders from the TBRS Community:
- Relaunch of the TBRS Baseball Card
- In honor of Rare Disease Day (February 28), we are relaunching the TBRS Baseball Card!
- The TBRS Baseball Card (aka the TBRS Trading Card) is a resource with personalized information about a TBRS patient that caregivers can share with clinicians and other support professionals!
- This resource has been translated into German, Spanish, and Japanese!
- Dutch coming soon!
- Click here for more information or to request your own card.
- This resource has been translated into German, Spanish, and Japanese!
- Relaunch of the TBRS Baseball Card
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- 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]
- 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.
- REMINDER: Our Regional Coordinator program has launched!
- 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
- We’re excited to announce that we’re officially starting the first step of our Drug Discovery and Repurposing Program!
Thanks! I hope you have a great weekend!
Kit Church, CARE Manager