February 21, 2025 – TBRS Community

TBRS Community’s Impact Report: A Look at How Far We’ve Come

We are thrilled to announce the release of our first-ever Impact Report, a comprehensive look at the progress we’ve made together as a community. This special edition covers multiple years of our work, highlighting our research agenda, funded projects, collaboration with the Overgrowth Syndromes Alliance, accomplishments during the CZI Rare As One grant, and our vision for the future. It also includes a transparent breakdown of our financials and a recap of our fundraising efforts.

This report is a testament to the power of patient-driven research and the incredible support of families, researchers, and advocates. Thank you for being a part of our journey—your support drives real change for individuals and families affected by TBRS!

Weekly Updates! – February 21, 2025

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Weekly Updates! - February 21, 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.

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 – or complete Count Me In for TBRS if you have not already!
- If you are interested in becoming a Regional Coordinator, it’s not too late to join!
  - Please reach out to me at [email protected]

Thanks! I hope you have a great weekend!

Kit Church, CARE Manager

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