Weekly Updates! - March 1, 2024

Hello everyone! Hope you had a great Rare Disease Day and are excited for TBRS Awareness Month. Here are some TBRS Community updates from this week:

  • Rare Disease Day – mini newsletter
  • Random Kindness for TBRS
    • In honor of Rare Disease Day and TBRS Awareness Month, we developed a “Random Acts of Kindness” flyer for TBRS
    • The campaign invites individuals to carry out random acts of kindness (like buying a stranger a coffee or volunteering in the community) 
    • After these gestures, participants are encouraged to distribute a TBRS Random Acts of Kindness Flyer
      • This flyer educates others on TBRS and encourages them to pay the random act of kindness forward
    • Read the full story and download the flyer here.
  • Surveillance Recommendations
    • We recently posted some Surveillance Recommendations on the TBRS Community website!
      • These recommendations were developed from the information in this paper by Dr. Kate Tatton-Brown.
      • NOTE: these are not guidelines, but are recommendations based on information gathered from TBRS patients.
    • Bring these recommendations to your next clinicians visit!
  • TBRS Exercise Challenge 2024
    • We have officially launched the 2024 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].
  • TBRS Community Biorepository – surveys needed!
    • COMBINEDBrain, the host of our Biorepository, is conducting a study to try and identify biomarkers, or a measurement of how well a treatment works for TBRS in the future.
      • This is necessary to find for any treatment study prior to clinical trials.
    • If you donated to the Biorepository at the TBRS Summit, there might be some surveys still needed from you for this project.
      • You can complete surveys for the Biomarker project by logging into Matrix.
      • I have emailed all participants who are missing surveys, so please check your email!
    • Please email me if you have any questions!

Thank you, and I hope everyone has a great weekend!

Kit Church, Research Coordinator

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