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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