December 20, 2025
Weekly Research Updates! - November 3, 2023
- 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
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