Weekly Updates! - March 1, 2024

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
  • For Rare Disease Day yesterday, we sent out a mini newsletter.
  • This newsletter included:
    • A Random Kindness for TBRS flyer
    • Information on the TBRS Exercise Challenge
    • Information on Count Me In for TBRS
    • A save-the-date for the next New Family Meet-Up, March 13
  • Look in your email or click the links above for more information on these topics!
• 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 kit@tbrsyndrome.org.
• 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