International SCN8A Alliance

?? Today is Purple Day – A Global Effort to Raise Awareness for Epilepsy SCN8A-related disorders are a devastating and rare form of genetic epilepsy that often begins in infancy and presents with treatment-resistant seizures and complex neurodevelopmental needs. On Purple Day, we join the global epilepsy community to call attention to these challenges and to the urgent need for precision care, earlier diagnosis, and targeted research. The International SCN8A Alliance remains committed to advancing clinical guidance, research collaboration, and direct support for families around the world. #PurpleDay #SCN8A #SCN8AAlliance #RareEpilepsies #EpilepsyAwareness #Neurogenetics #PatientAdvocacy #CureSCN8A #HealthEquity #PrecisionMedicine

?? SCN8A Update from Dr. Michael Hammer—geneticist, researcher, and the parent who discovered SCN8A’s role in pediatric epilepsy—shares a brief update on the current landscape of SCN8A research and community progress. ?? A must-watch for clinicians, researchers, and partners invested in rare epilepsy. #SCN8A #RareEpilepsy #Neurogenetics #StateOfSCN8A

?? The BRAIN Initiative is transforming neuroscience—and it needs our support. We're joining the American Brain Coalition in urging Congress to restore funding to $680 million in FY2026 to ensure continued progress in understanding and treating brain disorders, including epilepsy and SCN8A-related disorders. ?? This is not our initiative—but we’re proud to stand with others pushing for stronger investment in brain research. Organizations can sign on to this letter before Friday, March 28: https://lnkd.in/gArDMjHj #BRAINInitiative #NeuroScience #EpilepsyResearch #SCN8A #RareDisease #Advocacy

SCN8A Advocacy & Innovation at ASENT 2025 At ASENT 2025, our Executive Director, Gabi Conecker, highlighted the critical need for gene-targeted therapies in rare epilepsies, bringing the SCN8A patient voice into essential neurotherapeutic discussions. ?? Session: Gene-Targeted Therapy for Epilepsy ?? Topic: The Urgent Need for Gene Therapies in Rare Epilepsies ?? Focus: Building partnerships to accelerate SCN8A research & therapeutic innovation Advancing precision medicine for rare neurological disorders requires collaboration across research, industry, and advocacy—and we’re committed to being a driving force in this work. Comment below or message us to find out more. #Neurotherapeutics #GeneTherapy #EpilepsyResearch #SCN8A #RareDiseaseAdvocacy

?? Advocating for Rare Epilepsies at the National Epilepsy Walk? ??? We were proud to take part in the Epilepsy Foundation’s National Epilepsy Walk this weekend at the National Mall in Washington, DC. Beyond raising awareness, this event was an incredible opportunity to strengthen collaboration across the epilepsy community. At the Rare Epilepsy Network (REN) table, we helped spotlight the challenges and needs of families living with SCN8A-related disorders. We also continued pushing forward the National Plan for Epilepsy, working to ensure that rare epilepsy priorities remain at the forefront of national research and care coordination efforts. Advocacy and collaboration drive change. We are grateful to be part of this movement. Check out Epilepsy Foundation's website to see if there is a Walk for Epilepsy in your area: https://lnkd.in/dxRAAQmN #EpilepsyWalk #Neurotherapeutics #RareEpilepsy #NationalPlanForEpilepsy #PatientAdvocacy #SCN8A

With heavy hearts, we share the passing of our beloved Jacqueline "Jackie" Rodriguez on March 12, 2025, at just 11 years old. Jackie was beautiful—full of joy, kindness, and boundless energy. She loved LA Galaxy games, Disneyland, and, most of all, being a proud big sister to Gianna. Her strength and compassion inspired everyone she met, and she was a dedicated advocate for SCN8A at the Epilepsy Foundation of Los Angeles. Though her time here was far too short, her love and spirit will remain in our hearts forever. ??

A coordinated national effort for epilepsy research and care is long overdue. The reintroduction of the National Plan for Epilepsy Act (S. 494 & HR 1189) is a critical step forward. At a recent congressional briefing, SCN8A Alliance Co-Founder Gabrielle Conecker joined leading experts in the epilepsy field to highlight the urgent need for policy-driven solutions: ?? 3.5 million people in the U.S. live with epilepsy ?? Families face life-altering decisions without enough data ?? Better coordination = faster research translation & improved clinical care We are proud to stand with the Epilepsies Action Network, Epilepsy Foundation, and G2G Consulting to push for meaningful change. ?? How you can help: Support this legislation by contacting your representatives today. https://lnkd.in/dticE9HB ?? Learn more about the National Plan here: https://lnkd.in/gjp6p2Mq #ActForEpilepsy #PublicHealth #HealthPolicy #EpilepsyResearch #Epilepsy #EpilepsyAwareness #RareEpilepsies #SCN8A #CureSCN8A #SCN8AFamily #CollaborationForACure #Neuroscience #EpilepsyResearch #SCN8AAwareness #SCN8AStrong #ThisIsSCN8A #SCN8AAlliance #SCN8AResearch #SCN8AEpilepsy #SCN8AResearchRoadmap #SCN8ADiversity #SCN8AStories

?? Today is Rare Disease Day and We're Shining a Light on SCN8A and the Rare Disease Community ?? Today, on Rare Disease Day, we recognize the over 300 million people worldwide living with a rare disease—including those affected by SCN8A-related disorders. With fewer than 1,000 known cases globally, SCN8A is an ultra-rare disorder that demands urgent research, clinical advancements, and advocacy. At the International SCN8A Alliance, we are working tirelessly to: ?? Advance cutting-edge research to improve treatments and outcomes. ?? Advocate for policy changes that increase access to care. ?? Build a global network of families, clinicians, and researchers driving solutions. SCN8A research doesn’t just impact our community—it has far-reaching implications for epilepsy, neurodevelopmental disorders, and even broader neurological conditions. ?? Every discovery brings us one step closer to better treatments—not just for SCN8A, but for many other conditions rooted in brain function. ?? Join us in spreading awareness and making an impact. Support rare disease research, share this post, and help us push for a future where no family faces a rare disease alone. ?? Learn more about our work at https://scn8a.info #RareDiseaseDay #SCN8A #RareButMighty #CureSCN8A #EpilepsyAwareness #RareEpilepsies #SCN8AFamily #CollaborationForACure #Neuroscience #EpilepsyResearch #SCN8AAwareness #SCN8AStrong #ThisIsSCN8A #SCN8AAlliance #SCN8AResearch #SCN8AEpilepsy #SCN8AAwarenessDay #SCN8ASuperhero #SCN8AResearchRoadmap #SCN8ADiversity #SCN8AStories

?? Advancing the National Plan for Epilepsies ?? The International SCN8A Alliance is driving real change for SCN8A families and the broader epilepsy community by helping to lead the National Plan for Epilepsy Act (S. 494 & HR 1189)—a bipartisan initiative designed to: ? Accelerate research toward precision treatments ? Improve patient care pathways and diagnosis timelines ? Expand access to life-saving therapies At a recent congressional briefing, Senator Eric Schmitt joined SCN8A Executive Director Gabi Conecker and other advocates to push for meaningful change. Gabi shared: "Kids like mine spend far too much time in hospitals where doctors don’t know what to do next. We need a national strategy to translate research into life-saving treatments." A National Plan means better collaboration, faster innovation, and direct benefits for the neurology and epilepsy community—but we need your help to make it happen. ?? We urge policymakers, clinicians, and researchers to stand with us in supporting this critical legislation. ?? Take action & contact your legislators: https://lnkd.in/dticE9HB Learn more about this bipartisan effort: https://lnkd.in/gjp6p2Mq Together, we can create a future with faster diagnoses, more targeted treatments, and real hope for families affected by epilepsy. #EpilepsyResearch #SCN8A #Neurology #Epileptology #EpilepsyAdvocacy #NationalPlanForEpilepsy #PrecisionMedicine #RareEpilepsies #MedicalInnovation

?? Expanding Access to SCN8A Care ?? We’re excited to announce a new SCN8A/SCN2A Multidisciplinary Clinic at Children’s Hospital Colorado, led by Dr. Megan Abbott! This clinic expands expert care alongside Children’s National Hospital (D.C.), where Dr. John Schreiber leads another multidisciplinary clinic—helping families navigate complex medical needs with: ? Specialists across epilepsy, genetics, GI & more ? Coordinated, patient-centered care ? Opportunities to advance SCN8A/SCN2A research "Families shouldn’t have to navigate SCN8A alone," says Gabi Conecker, SCN8A Alliance President. This is a major step forward in expert care & research acceleration! ?? Learn more: https://lnkd.in/gHPaKRz9 #SCN8A #SCN2A #EpilepsyResearch #RareEpilepsy #MultidisciplinaryCare #PediatricNeurology