November 14, 2025
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! kit@tbrsyndrome.org
- 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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