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Weekly Updates! – March 21, 2025

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Weekly Updates! - March 21, 2025

Hello everyone, and happy Spring (Northern Hemisphere) or Fall (Southern Hemisphere)! I have a few updates this week:

  • Read our first ever IMPACT REPORT now!
      • We’re excited to share our first-ever Impact Report, showcasing the incredible progress we’ve made over the years! 
        • This report highlights all of our accomplishments, from groundbreaking research to global advocacy
        • The report also shows the power of patient-driven efforts, and how much we can do together.
      • Click here to read the full report and see how your support has fueled real change!
  • Join the TBRS Exercise Challenge 2025 before it’s too late!!
      • We have officially launched the 2025 TBRS Exercise Challenge! 
        • Through this challenge, individuals with TBRS commit to a daily exercise of their choice in exchange for pledges and donations to the TBRS Community. This presents an exciting fundraising opportunity while encouraging healthy practices for individuals with TBRS.
        • In March, individuals can sign up for the Challenge and begin collecting pledges. The Challenge takes place throughout the month of April!
      • To register, visit the TBRS Exercise Challenge website and click “join team”
        • Here you can sign up and create your team for the challenge!
      • Anyone can participate in the challenge – and all of the funds raised go to improving the Patient Registry and making data more easily accessible for research!
      • If you have any questions or need help setting up your team, please contact me at [email protected].
  • Upcoming TBRS Conference in Spain!
  • Upcoming: TBRS Friends and Family Support Group – March 30, 2025
    • This event will take place Sunday, March 30, 2025 at 2:00 PM Eastern Time via Zoom
    • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
    • Any parents or caregivers of someone diagnosed with TBRS are welcome. 

Thanks! Please reach out to me with any questions at [email protected].

Kit Church, CARE Manager

Weekly Updates! – March 21, 2025 Read More »

Weekly Updates! – March 14, 2025

Blog /

Weekly Updates! - March 14, 2025

Hello everyone! I’m happy to be back, and I hope everyone has had a great couple of weeks. I have a few updates this week:

  • Join the TBRS Exercise Challenge 2025 before it’s too late!!
      • We have officially launched the 2025 TBRS Exercise Challenge! 
        • Through this challenge, individuals with TBRS commit to a daily exercise of their choice in exchange for pledges and donations to the TBRS Community. This presents an exciting fundraising opportunity while encouraging healthy practices for individuals with TBRS.
        • In March, individuals can sign up for the Challenge and begin collecting pledges. The Challenge takes place throughout the month of April!
      • To register, visit the TBRS Exercise Challenge website and click “join team”
        • Here you can sign up and create your team for the challenge!
      • Anyone can participate in the challenge – and all of the funds raised go to improving the Patient Registry and making data more easily accessible for research!
      • If you have any questions or need help setting up your team, please contact me at [email protected].
  • Upcoming TBRS Conference in Spain!
  • Upcoming: TBRS Friends and Family Support Group – March 30, 2025
    • This event will take place Sunday, March 30, 2025 at 2:00 PM Eastern Time via Zoom
    • The TBRS Community offers a monthly Friends and Family Support Group via Zoom. Families from all around the world can participate. We create a safe place to share thoughts, feelings, concerns, and emotions without judgment. The meeting seems to take a different shape every time we gather—sometimes we focus on sharing resources or experiences, but we always seek to make everyone feel comfortable and supported. 
    • Any parents or caregivers of someone diagnosed with TBRS are welcome. 
  • REMINDER: Relaunch of the TBRS Baseball Card 
    • In honor of Rare Disease Day (February 28), we have relaunched 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. The idea is to help teach those who work with the TBRS patient more about them and their symptoms.
      • This resource has been translated into German, Spanish, and Japanese!
        • Dutch coming soon!
      • Click here for more information or to request your own card.

Thanks! Please reach out to me with any questions at [email protected].

Kit Church, CARE Manager

Weekly Updates! – March 14, 2025 Read More »

Weekly Updates! – February 28, 2025

Blog /

Weekly Updates! - February 28, 2025

Happy Rare Disease Day! I hope everyone had a great week. Just a few updates and reminders from the TBRS Community:

  • TBRS Exercise Challenge 2025!!
    • In honor of Rare Disease Day, we have officially launched the 2025 TBRS Exercise Challenge! 
    • To register, visit the TBRS Exercise Challenge website and click “join team”
      • Here you can sign up and create your team for the challenge!
    • Anyone can participate in the challenge – and all of the funds raised go to improving the Patient Registry and making data more easily accessible for research!
    • If you have any questions or need help setting up your team, please contact me at [email protected].
  • REMINDER: 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.
    • 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! 

Thanks! I will be out of the office next week, so please email all urgent questions to [email protected]. Otherwise, I will respond on Monday, March 10. I hope you have a great weekend!

Kit Church, CARE Manager

Weekly Updates! – February 28, 2025 Read More »

TBRS Community looks for a Treasurer

News /

TBRS Community is looking for a Treasurer!

We’re searching for a dedicated Treasurer to join our Board of Directors! This is a volunteer, remote position where you can use your financial expertise to make a real impact on families affected by TBRS. As Treasurer, you’ll help ensure our organization’s financial sustainability, allowing us to continue making a difference.

Key Responsibilities:

  • Oversee financial management & reporting
  • Maintain accurate financial records
  • Help prepare the annual budget
  • Provide financial guidance to the Board

If you or someone you know has experience in finance, accounting, or nonprofit management, we’d love to hear from you! Questions? Email [email protected]

Thank you for helping us strengthen our community!

View the job description
Complete your application

TBRS Community looks for a Treasurer Read More »

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

News /

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!

Click here to view our first Impact Report

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

Weekly Updates! – February 21, 2025

Blog /

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.
    • 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! 

Thanks! I hope you have a great weekend!

Kit Church, CARE Manager

Weekly Updates! – February 21, 2025 Read More »

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