iiinova — where your digital self keeps evolving

scn8a.bsky.social @scn8a.bsky.social · 05/05/2025

💜 Help us spread the word! SCN8A grandma, Ewa Slaby, painted these 4 stunning pieces inspired by her granddaughter Sophie, who lives with the daily challenges of SCN8A. Bid now to support research & bring one home! Auction ends May 9!🖼️ bit.ly/scn8a-art-auction #SCN8A #ArtAuction #SCN8AStrong

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scn8a.bsky.social @scn8a.bsky.social · 23/04/2025

We’re excited to welcome Raquel Miralles, PhD, as our new Director of Science and Research! With expertise in SCN8A epilepsies and a commitment to community-driven research, Raquel will lead key initiatives and collaborations. Join us in welcoming her to the SCN8A Alliance! #SCN8A

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scn8a.bsky.social @scn8a.bsky.social · 22/04/2025

The National Plan for Epilepsy Committee (NPEC) needs volunteers from across the epilepsy community—patients, caregivers, clinicians, researchers, and advocates—to join work groups shaping the future of epilepsy. Apply by April 24! bit.ly/4lMxsIC #Epilepsy #RareEpilepsy #Research #Advocacy

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scn8a.bsky.social @scn8a.bsky.social · 10/04/2025

💜 Yesterday we helped launch the new SCN8A/SCN2A Multidisciplinary Clinic at Children’s Hospital Colorado! Years in the making, this clinic delivers coordinated, expert care—and real hope for families. In partnership w/ Families SCN2A + Dr. Abbott’s team. #SCN8A 🔗https://bit.ly/ChildrensMDC

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scn8a.bsky.social @scn8a.bsky.social · 08/04/2025

🎨 Be part of something beautiful! The SCN8A Art Auction supports research into GI, behavior, and other non-seizure challenges. Donate art, crafts, or creative services—every piece matters. 📅 Submit by April 15 🛍️ Auction: 4/30–5/9 👉 scn8a.info/art-auction #SCN8A #ArtAuction #SCN8AAwareness

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scn8a.bsky.social @scn8a.bsky.social · 03/04/2025

🎨 Acclaimed artist Janet Hassinger donated 3 original works to our SCN8A Art Auction! 🔗 janethassinger.com Want to contribute? We’re accepting all kinds of art through April 15. 🔗 scn8a.info/art-auction Auction runs April 30–May 9. #SCN8A #ArtAuction #RareDisease

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scn8a.bsky.social @scn8a.bsky.social · 02/04/2025

🎨 Artist Adriana Perez shares her sea otter painting for the SCN8A Art Auction. Her work is based on a real-life moment in Morro Bay. Submissions are still open—join the celebration of creativity! 🖌️ Submit here: scn8a.info/art-auction #SCN8A #ArtForACure #SCN8AAwareness

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scn8a.bsky.social @scn8a.bsky.social · 26/03/2025

Today is #PurpleDay 💜 We’re spotlighting SCN8A—one of the rarest forms of epilepsy. Underdiagnosed. Underfunded. Misunderstood. But not alone. 💥 SCN8A families fight every day for answers, support, and care that meets their needs. Today, we stand with them. #SCN8A #EpilepsyAwareness #CureSCN8A

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scn8a.bsky.social @scn8a.bsky.social · 26/03/2025

🎥 Dr. Michael Hammer shares a quick update on the current state of SCN8A research & community progress. A vital perspective from the scientist—and SCN8A parent—who discovered the gene’s role in epilepsy. #SCN8A #RareEpilepsy #StateOfSCN8A

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scn8a.bsky.social @scn8a.bsky.social · 20/03/2025

👟 Making Strides for the Epilepsy Community 👟 At the National Epilepsy Walk in Washington, DC, we stood with families, advocates, and researchers to raise awareness, strengthen partnerships, and push for progress on the National Plan for Epilepsy. This event was about creating change for epilepsy.

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scn8a.bsky.social @scn8a.bsky.social · 11/03/2025

The reintroduction of the National Plan for Epilepsy Act (S. 494 & HR 1189) marks a critical step forward in improving epilepsy care & research. Families navigating complex epilepsies like SCN8A can’t wait for solutions. We need national coordination to translate research into treatments faster.

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