Intractable

Behind every seizure is more than a moment,
it’s a child, a parent, and a fight that never stops 💜

For many families, that fight isn’t just epilepsy…
it’s fighting to access the treatment that could help 🌿

This Purple Day, we’re raising awareness for epilepsy
and the reality families face every single day.

💬 Why is access to treatment still a battle?
Drop your thoughts below ⬇️

💜 Share this to help raise awareness
🌿 Let’s break the stigma together

New Hope for Dravet Syndrome! 🧬💜
Exciting news from the latest clinical trials for zorevunersen (STK-001). Unlike traditional medications that just mask symptoms, this new approach targets the root cause of Dravet syndrome by boosting the SCN1A protein in the brain.

The highlights:
✅ Big Results: Early data showed up to an 80%+ reduction in convulsive seizures for some patients.
✅ Beyond Seizures: Improvements were also seen in cognition and daily functioning.
✅ Next Steps: A "gold standard" Phase 3 trial (the EMPEROR study) is officially underway to confirm these life-changing results!

This is a massive step forward for the community and the future of precision medicine in epilepsy.

Drug breakthrough for children with rare form of extreme epilepsy Families say the groundbreaking medicine is transforming the lives of children with Dravet syndrome.

🌟 Apologies for the lack of updates lately. We’ve been focused on addressing some medication supply issues. As a voluntary group, we’re all juggling our own children with complex needs, which can make things challenging. Thank you for your patience and understanding as we work through this! Your support means a lot to us. 💜

🌱 This Cannabis Awareness Month, we're thrilled to announce the launch of four educational videos focused on the Drug Science observational trial exploring the use of whole plant medical cannabis for treating intractable epilepsy.

📚 We’re also excited to introduce our charity characters through the Intractable Learning initiative for Epilepsy awareness month!
🌿 Meet Ben the Green Guardian—a friendly guide helping audiences of all ages understand epilepsy and explore how cannabis-based medicines can support treatment.
These characters are designed to inform, inspire, and make complex topics accessible to everyone, from children to professionals.

🧠 Each video will delve into the findings of this important trial, showcasing real stories and insights from families impacted by epilepsy.

Our characters aim to engage and educate audiences of all ages about these critical topics.

🙏 A special thank you to our charity trustee, Chris Tasker, for his expertise and support in creating these resources. Check out his work at Cannabis Science Training https://www.cannabissciencetraining.com/.

👉 Stay tuned for more details, and join us on this educational journey to raise awareness and support for those affected by intractable epilepsy!

🔗 To learn more about our work and to support us, please visit our website https://www.intractable.org.uk/ and consider donating!