Weekly Updates! - April 5, 2024

Weekly Updates! - April 5, 2024

Hello everyone! Hope you’re having a great week. I apologize for not posting updates the last 2 weeks, we have been a bit busy with traveling to conferences and wrapping up some plans. Here are some TBRS Community updates from the last few weeks:

• TBRS Exercise Challenge - NOW LIVE
  • The TBRS Exercise Challenge kicked off April 1!
    • The TBRS Challenge is a “Move-A-Thon” that raises money for TBRS while promoting a healthy lifestyle.
    • Participants pick movement exercises, set goals, and collect sponsors for the event.
    • ANYONE can participate in this challenge.
    • This year, money raised will be used to fund updates to the TBRS Patient Registry, including translations and standardization of data to increase the value of the data!
  • Click here to support the challenge!
• TBRS Baseball Card - translations!
  • 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!
    • It will be available in Spanish soon.
    • Click here for more information or to request your own card.
• New Family Welcome Packet - translations!
  • The TBRS Community New Family Welcome Packet is a resource that helps TBRS families, new and current, navigate TBRS information, support resources, and research participation.
    • This document is currently in English, but is being translated into Spanish and German.
    • To access this resource, click here.
• TBRS Conference in Spain
  • The TBRS Conference in Burgos, Spain was Friday, March 22 - Sunday, March 24, 2024. This was put on by the TBRS spain community, Asociación Española de Síndrome de Tatton Brown Rahman.
    • For more information, click here.
• TBRS Conference in France
  • The TBRS Conference in Nancy, France was Friday March 29, 2024.
    • For more information, click here.
• TBRS Community website updates
  • We are currently updating the TBRS Community website - the new website will have a family section and a researcher section, with more updated information and translation ability.
    • We are also including a newsletter archive, a gene variant walkthrough, and easy access to support and research resources.
    • I will have more information on this as the website is developed!
• Grant applications
  • This week, we have collaborated on several different grants to benefit the TBRS Community and the Overgrowth Syndromes Alliance (OSA) research.
    • As we hear back regarding these applications I will post more information
    • If you have any questions about this, please feel free to reach out to me.
• Applications for TBRS Registry data
  • Recently, we have had 3 more applications for TBRS Registry data access.
    • We are reviewing these applications, but this truly shows the importance of the Patient Registry!
    • We are also in the process of updating this registry, which we are hoping to have completed in the coming months.
      • To participate in the TBRS Patient Registry, click here.

Thank you, and I hope you have a great weekend!

Kit Church, Research Coordinator