Weekly Research Updates! - January 5, 2024

  • I am doing more writing for the new website
    • We are going through edits now, but I am looking forward to launching soon
  • EVENT: Special needs estate planning session – follow up coaching
    • this Monday, Jan 8, 4-5pm EST
    • Sign up here: https://givebutter.com/groupcoaching
  • EVENT: Regional Coordinator program
    • First meeting TBD
    • Sign up here: https://givebutter.com/wEVOe2
  • We are looking into grants for the Overgrowth Syndrome Alliance (OSA)
  • I am looking into bone issues in TBRS today using the registry data
    • If you have any questions about symptoms in TBRS or what is in the registry, post on Facebook or email me! [email protected]
  • I will be reaching out to biorepository participants in the registry to talk about linking their biorepository sample to their Registry data with the Clinical Research ID
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