Weekly Updates! - February 23, 2024

Weekly Updates! - February 23, 2024

Hello everyone! Hope you’re having a great week. Here are some TBRS Community updates from this week:

• Checking in with our Research Network
  • This week, we’ve been reaching out to the members of our Collaborative Research Network to get research updates and remind them of our resources, including:
    • New Patient Priority results
      • Click here to participate in the Patient Priority Survey
    • Biorepository
      • Click here to participate in the Biorepository
    • Patient Registry
      • Click here to participate in the Patient Registry
• Development Director - interviews
  • We’ve had several interviews for the Development Director position at the TBRS Community!
  • We’re hoping to finalize our decision in the next couple of weeks, and have our new Development Director introduced soon!
• Overgrowth Syndromes Alliance
  • OSA is a joint project with our colleagues at the Malan Syndrome Foundation
  • We are creating educational materials for clinicians to raise awareness about overgrowth syndromes, including a pamphlet
• Presentation at Washington University in St. Louis
  • Washington University in St. Louis is hosting a Rare Disease Day event February 29
  • Our Vice President, Kerry Grens, will be presenting on the Overgrowth Syndromes Alliance and our Patient Priority Survey results
    • We’re excited to get this information out to as many researchers as possible to facilitate patient-centered research for TBRS and other overgrowth syndromes.
    • This will also bring awareness to the Overgrowth Syndromes Alliance and the TBRS Community.
• 5th Annual TBRS Exercise Challenge
  • The TBRS Exercise Challenge was designed by Ashley Hatton, a very active member of the TBRS Community!
  • 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!
    • We will have a registration link available soon!
    • If you have any questions, email kit@tbrsyndrome.org
• 10th Anniversary of the Discovery of TBRS - Time to Celebrate!
  • In addition to celebrating Rare Disease Day on February 29, we have another exciting day coming up in the next few weeks: TBRS Awareness Day and the 10th anniversary of the discovery of TBRS!
    • We are planning some events to celebrate the anniversary, and would love feedback from the community!
      • If you have any ideas to celebrate the 10th anniversary of the discovery of TBRS, reach out to me at kit@tbrsyndrome.org

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

Kit Church, Research Coordinator