Weekly Research Updates! - January 26, 2024

Hello all! Hope you’ve had a good week so far. Here are my updates from this week:

    • New Family Welcome Packet
      • We are currently working on a welcome packet that will be given to new families that join our community, as well as current families. 
      • We have a nice draft finished and are working on some minor edits and additions. It should be out fairly soon!
    • Development Director
      • The TBRS Community is hiring a Development Director!
      • This Development Director would be responsible for creating a strategic development plan for the organization, advancing donor communications and outreach, assisting with grant prospection, and diversifying funding sources and streams to support the TBRS Community’s programs and missions. 
    • TBRS Translation Accelerator Grant
      • The TBRS Community is currently offering two $50,000 grants, which will be awarded to support and accelerate therapeutic development for Tatton Brown Rahman Syndrome. 
        • The deadline for these applications is February 1, 2024 at 11:59 EST. 
      • We’ve recently gotten some questions and feedback about grant ideas from some members of our Collaborative Research Network
        • I am excited to share the winners of the Grant with you – look forward to this in mid- to late-February!
      • Click here to view the full grant announcement and application process.
    • TBRS Patient Registry
  • REMINDER: The TBRS Patient Registry is a collection of data from patients and families on TBRS. This registry provides valuable data to researchers to help them further understand TBRS. Researchers also use this data to answer important questions on health and treatment development for our community. 
    • I’ve been asked by a few families this week how common symptoms are in TBRS. I would like to remind everyone that this is an option if you have any questions about registry data!
      • If you have any questions about how common symptoms are, please reach out as well! 
      • If you would like to participate in the registry, here is the link
    • RESEARCHERS: Click here to apply for TBRS Patient Registry data.

Have a great weekend!

Kit Church, Research Coordinator

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