💜 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!🖼️ https://bit.ly/scn8a-art-auction #SCN8A #ArtAuction #SCN8AStrong

05.05.2025 20:08 — 👍 0    🔁 0    💬 0    📌 0

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

23.04.2025 00:35 — 👍 1    🔁 0    💬 0    📌 0

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!

 https://bit.ly/4lMxsIC
#Epilepsy #RareEpilepsy #Research #Advocacy

22.04.2025 00:47 — 👍 2    🔁 0    💬 0    📌 0

💜 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

09.04.2025 23:59 — 👍 3    🔁 0    💬 0    📌 0

🎨 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
👉 https://scn8a.info/art-auction/
#SCN8A #ArtAuction #SCN8AAwareness

08.04.2025 01:15 — 👍 1    🔁 0    💬 0    📌 0

🎨 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

03.04.2025 20:10 — 👍 4    🔁 0    💬 0    📌 0

🎨 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: https://scn8a.info/art-auction
#SCN8A #ArtForACure #SCN8AAwareness

02.04.2025 22:34 — 👍 1    🔁 0    💬 0    📌 0

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

26.03.2025 18:34 — 👍 4    🔁 0    💬 0    📌 0

🎥 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

26.03.2025 14:43 — 👍 0    🔁 0    💬 0    📌 0

👟 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.

20.03.2025 14:02 — 👍 1    🔁 0    💬 0    📌 0

📢 Take action today: Contact your legislators to support S. 494 & HR 1189. It takes just 2 minutes to make an impact.

🔗 https://www.epilepsiescaucus.org/supportplan

🔍 Learn more: https://www.epilepsiescaucus.org/nationalplanreintro

11.03.2025 21:09 — 👍 0    🔁 0    💬 0    📌 0

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.

11.03.2025 21:09 — 👍 0    🔁 1    💬 1    📌 0