Weekly Research Updates! - November 3, 2023

Weekly Research Updates! - November 3, 2023

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

Featured News

Collaborating with Stanford Medicine to Increase the Rate of Diagnosis for TBRS and Overgrowth Syndromes
October 6, 2026

Collaborating with Stanford Medicine to Increase the Rate of Diagnosis for TBRS and Overgrowth Syndromes

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Big News for the TBRS Community: $75,000 Grant to Advance Gene Therapy Research
October 6, 2026

Big News for the TBRS Community: $75,000 Grant to Advance Gene Therapy Research

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Advancing Care, Knowledge, and Connection Through Clinical Education
October 6, 2026

Advancing Care, Knowledge, and Connection Through Clinical Education

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Monthly Updates! - September 2026
October 6, 2026

Monthly Updates! - September 2026

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