Family and Researcher Roundtable
Having made substantial strides in preparing the SCN8A community for two clinical trials over the past three years, TCSF is now shifting its fall education series from Clinical Trial Readiness to a dynamic Family and Researcher Roundtable series, offering a broader scope of discussions on research and quality-of-life topics to ensure our community remains well-informed and actively engaged in the care and treatment of their loved ones with SCN8A.
2025
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Advancing SCN8A Research: Opportunities for Family ParticipationDr. Michael Hammer, University of Arizona
Dr. Madeleine Oudin, Tufts University Kacie Craig, The Cute Syndrome Foundation |
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Seizure Types Made Simple: Understanding What You SeeDr. Daniel Lowenstein, University of California, San Francisco
Kacie Craig, The Cute Syndrome Foundation |
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Partnering for Progress: TCSF + Citizen Health in ActionKate Haldeman, Citizen Health
Kacie Craig, The Cute Syndrome Foundation |
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SUDEP and Seizure Detection with TCSF and Danny Did FoundationKatie Gaughan, Danny Did Foundation
Kacie Craig, The Cute Syndrome Foundation |
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Movement Matters: Understanding Movement Disorders in SCN8ADr. Sunanjay Bajaj, UTHealth Houston
Kacie Craig, The Cute Syndrome Foundation |
Series Sponsors
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2024
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Unlocking Treatment Breakthroughs: Understanding the Praxis EMBOLD Study PhasesBrian Pfister, Praxis Precision Medicines
Brian Spar, Praxis Precision Medicines Kacie Craig, The Cute Syndrome Foundation |
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Difficult Behaviors, Family Stress, and Strategies to Support Well-BeingDr. Leann Smith Dawalt, University Center for Excellence In Developmental Disabilities at the Waisman Center
Kacie Craig, The Cute Syndrome Foundation |
Series Sponsors
Platinum Sponsor
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Gold Sponsor
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2023
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Using ASOs to Treat SCN8A: Challenges and OpportunitiesDr. Madeleine Oudin, Tufts University and SCN8A mom
Kacie Craig, The Cute Syndrome Foundation and SCN8A mom |
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Delineating the Phenotypic Landscape of SCN8A-related DisordersDr. Jillian McKee, Children’s Hospital of Philadelphia
Jan Magielski, Children’s Hospital of Philadelphia Kacie Craig, The Cute Syndrome Foundation |
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SCN8A Mutations: De Novo vs. Inherited and the Risk of RecurrenceDr. Miriam Meisler, University of Michigan
Kacie Craig, The Cute Syndrome Foundation |
Series Sponsor
