Collaborations - many ideas, inspired by meeting all of you, reaching out to us and other researchers, reenergized, testament to family involvement and engagement with research community
Joined the Rare Epilepsy Network
Free for us to join
25-50% of TBRS patients have experienced at least one seizure
Policy work, resources for epilepsy, shared learning
Combined Brain
Know about missing samples, boxers, etc
Getting variants from me
Working on getting those out
RR3 - Dec 8 - emphasis on working groups
Also announcing 2 research grants for $50k, focus on biomarkers
Explanation of biomarkers
Looking into biomarkers and endpoints in other disorders to find possibilities for our disorder
Featured News
October 6, 2026
Collaborating with Stanford Medicine to Increase the Rate of Diagnosis for TBRS and Overgrowth Syndromes
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October 6, 2026
Big News for the TBRS Community: $75,000 Grant to Advance Gene Therapy Research
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October 6, 2026
Advancing Care, Knowledge, and Connection Through Clinical Education