Working collaboratively to support and expedite finding answers for those with SCN8A-DEE and other rare epilepsies.
External link for International SCN8A Alliance
Washington, US
We are so excited for this event and thrilled that our Executive Director, Gabrielle Conecker, will be speaking at this momentous event on behalf of SCN8A families and the broader rare epilepsy community.
Founder of G2G Consulting & Co-Founder of Women's Digital Health Network & Breast Cancer Early Detection Coalition
💜 Monday, February 10th, 2025, is International Epilepsy Day! 💜 Epilepsy is more than just seizures—it impacts daily life in countless ways. This International Epilepsy Day, we join the global epilepsy community in raising awareness and advocating for better care, inclusion, and research. This year’s focus is on closing the treatment and inclusion gaps as part of the World Health Organization’s 10-year Global Action Plan (IGAP). By 2031, the goal is to: ✅ Expand epilepsy care by 50% worldwide ✅ Ensure 80% of countries have laws that protect the rights of people with epilepsy 🌟✨ From the SCN8A community, we are spotlighting Ksawier, our SCN8A Superhero from Poland! Ksawier’s love for life shines bright, even as he faces the challenges of epilepsy and other conditions caused by the SCN8A gene. His mother, Agnieszka, shares: “When he smiles, all the heavy past becomes insignificant… He fights, and I know that I will never give up either.” 💜Thank you, Ksawier, for inspiring us with your strength and joy!💜 #MyEpilepsyJourney #InternationalEpilepsyDay #EpilepsyAwareness #ClosingTheGap #IGAP #EndEpilepsy #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aepilepsy #scn8afamily #scn8asuperhero #scn8aresearchroadmap #scn8adiversity #scn8astories #scn8afact
💜 TODAY is International SCN8A Awareness Day! 💜 Join us TODAY at 11 AM EST for our annual global gathering, where we will discuss the State of SCN8A—the progress we’ve made, the challenges we face, and the path forward for better treatments and a cure. SCN8A is more than just a rare disorder—it’s a critical brain gene that plays a key role in regulating electrical signaling. Research into SCN8A doesn’t just impact our community—it has the potential to drive discoveries for traumatic brain injury (TBI), other epilepsies, neurodevelopmental disorders, and even neurodegenerative diseases. This is more than just a meeting. It’s a moment for our global SCN8A community—families, clinicians, researchers, and industry partners—to come together, share experiences, and drive the conversation forward. 🌍 With live two-way translation in 50+ languages, every voice matters. 📢 Join us: https://lnkd.in/guGMD4Up #scn8aawarenessday #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aresearch #scn8aepilepsy #scn8afamily #scn8asuperhero #scn8aresearchroadmap #scn8adiversity #scn8astories
International SCN8A Awareness Day, Feburary 9th, is almost here! On this day, we reflect on the year we've had and the year ahead. Guests from the community including clinicians, researchers, caregivers, and beyond join us to share their reflections on the state of SCN8A and celebrate all our community has accomplished. ✅ Please join us for the live SCN8A Awareness Day Event to hear from the community and lend your support. https://lnkd.in/guGMD4Up #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aresearch #scn8aepilepsy #scn8afamily #scn8asuperhero #scn8aresearchroadmap #scn8adiversity #scn8astories #scn8a
Thank you to the Epilepsy Foundation for sharing this important statement. We stand with you and as you shared we also "stand with the disability community in advocating for equal opportunities and ensuring that policies are based on facts, not stigma."
The Epilepsy Foundation of America chose to take time before issuing a statement to first honor the lives lost and hold space for their families as they grieve. Our hearts are with all those affected by the recent tragedies in Washington, DC, and Philadelphia. Epilepsy is a medical condition that affects millions of Americans, and like other disabilities, it should never be used to diminish the abilities or worth of any individual. The federal government has long recognized people with epilepsy as part of its commitment to inclusive hiring practices, ensuring that qualified individuals have opportunities to serve in critical roles across agencies, including the Federal Aviation Administration (FAA). The suggestion that individuals with epilepsy—or any other disability—are inherently unfit for service is not only misleading but harmful. It reinforces outdated stereotypes that ignore the significant contributions people with disabilities make to every sector, including aviation, medicine, law enforcement, and public service. The FAA has stringent medical and safety standards in place for all personnel, including air traffic controllers, to ensure public safety while also upholding principles of non-discrimination. At the Epilepsy Foundation, we stand with the disability community in advocating for equal opportunities and ensuring that policies are based on facts, not stigma. We will continue to fight against misinformation and promote a society where people with epilepsy and other disabilities are valued for their skills, experience, and dedication to their work.
📢 Calling Epileptologists, Neurologists, and Researchers! We’re preparing for International SCN8A Awareness Day on February 9th and need your expertise and support. Whether you can help with outreach, education, or events, your contribution can amplify awareness and support for SCN8A families worldwide. 🌐 https://lnkd.in/ghr5j9vn Together, we can make a meaningful impact for the SCN8A community. #Neurology #RareEpilepsy #SCN8AAwarenessDay #SCN8AFamily #VolunteerOpportunity #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aresearch #scn8aepilepsy #scn8asuperhero #scn8aresearchroadmap #scn8adiversity #scn8astories #scn8a
💜 SCN8A Ambassadors: A Vital Resource for Families 💜 Navigating the complexities of SCN8A can be overwhelming for families. That’s why the International SCN8A Alliance is proud to highlight our SCN8A Ambassadors: Tammy, Mary, Megan, Kristin, and Elizabeth. These dedicated parents and caregivers volunteer their time to offer support, insights, and encouragement to families managing SCN8A diagnoses. For clinicians, researchers, and professionals in the SCN8A space, our Ambassadors serve as a bridge to the community. They provide first-hand knowledge of the day-to-day realities of SCN8A and ensure families feel connected, informed, and empowered. Their efforts are instrumental in fostering understanding and improving outcomes. 📧 Encourage families you work with to reach out for guidance or support at ambassadors@scn8a.info. 📖 Learn more about our Ambassadors and their impact: https://lnkd.in/grRZkwx9 Together, we can make a difference for SCN8A families. 💜 #SCN8A #SCN8AResearch #SCN8ACommunity #Epilepsy #Rare #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aresearch #scn8aepilepsy #scn8afamily #scn8asuperhero #scn8aresearchroadmap #scn8adiversity #scn8a
The International SCN8A Alliance is proud to share our Major Strides in 2024, a year made possible by the dedication of clinicians, researchers, and industry partners like you. 🧬 From publishing the first global SCN8A treatment consensus to advancing the SCN8A Research Roadmap, your expertise and collaboration have been pivotal in shaping better care and driving progress for families worldwide. 📚 We’ve also supported clinical trials, strengthened research networks through grants, and amplified diverse SCN8A experiences to create a brighter, more informed future for this community. Your work is the foundation of these milestones, and we are honored to collaborate with such dedicated professionals. Together, let’s accelerate breakthroughs and improve quality of life for those impacted by SCN8A. View our 2024 highlights! #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aresearch #scn8aepilepsy #scn8afamily #scn8aresearchroadmap #scn8adiversity #scn8astories #scn8a
💜 Thank You for an Incredible Year-End Campaign! 💜 Thanks to your generosity, we raised $14,054—doubled to over $28,000! These funds will help drive critical progress for SCN8A families in 2025. Here’s how: 📚 35+ Online Family Meetings Empowering caregivers with expert insights, resources, and tools to advocate for their children. Explore upcoming family meetings: scn8a.info/events 🔬 Research Roadmap Implementation Accelerating the development of life-changing therapies and improving quality of life. 🌐 Comprehensive Research Network Uniting families, clinicians, researchers, and pharmaceutical partners to fast-track breakthrough discoveries. Together, we’re making meaningful strides toward better treatments and new hope for SCN8A families. Here’s to a year of collaboration and progress in 2025! 💜 #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aresearch #scn8aepilepsy #scn8afamily #scn8asuperhero #scn8aresearchroadmap #scn8adiversity #scn8astories
Wishing you and your loved ones a 2025 filled with cherished family moments, good health, and progress toward improved treatments and outcomes for everyone impacted by SCN8A. We are incredibly grateful for the families, friends, and supporters who helped us raise over $14,000—matched to an amazing $28,000! These funds will drive major Alliance initiatives, supporting research prioritized by families and global scientists to accelerate new and better treatments. Here’s to continuing our global collaboration in 2025 as we work toward a cure for SCN8A. 💜 #scn8a #scn8aawareness #scn8astrong #thisisscn8a #curescn8a #scn8aalliance #scn8aepilepsy #scn8aresearch #scn8afamily #scn8asuperhero #scn8aresearchroadmap #scn8adiversity #scn8astories