Young Epilepsy

28/08/2026

Earlier this year, we asked our community to help shape the future of support for children and young people with medical conditions in education.

Nearly 1,000 parents, carers and young people responded to the government's consultation, sharing their experiences and calling for stronger support.

The government has now published its response, recognising strong support for improving the guidance and expanding the legal duties to other education settings. However, it has delayed publishing the updated guidance while it makes further changes, including clarifying the roles and responsibilities of the health sector in supporting education settings to deliver support for their students.

Whilst this further work is important, the delay in updated guidance will no doubt be disappointing for many of you.

Thank you to everyone who shared their experiences and helped make the case for change. We'll continue to campaign for every child with epilepsy to be safe, supported and included at school.

Read more in our latest update: https://www.youngepilepsy.org.uk/news/government-delays-school-support-guidance

28/08/2026

A huge thank you to Manchester United for sharing Zac's story and helping shine a spotlight on his incredible challenge. 💜

Many of you may already know Zac. Since being diagnosed with epilepsy, he has spent years fundraising for Young Epilepsy and St Piers School and College, inspiring other young people and raising over £100,000 to support children and young people living with the condition.

His latest challenge has seen him travel 500 miles from Surrey to Old Trafford and back again, proving once more that epilepsy doesn't have to define what a young person can achieve.

Zac, thank you for everything you've done for Young Epilepsy, St Piers School and College and the wider epilepsy community. We couldn't be prouder to be part of your journey. 💜

Watch Manchester United's feature on Zac below 👇

https://www.manutd.com/en/news/meet-the-united-fan-on-an-incredible-500-mile-trip?utm_source=facebook&utm_medium=story&utm_campaign=club_news&fbclid=IwY2xjawT-TNBwZG9mAWV4dG4DYWVtAjExAGJyaWQRMUN0NWZnVEw2dk96WXJXR0JzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeTK9nrt3BdtLG###7HjGXKp8X0hAzjBK4JTqv31mx70hMXWS821ispjNsapI_aem_nzx8mp_YqcJxe9WzKWC-QQ

If you'd like to support Zac's Great Big Challenge, you can donate here: https://zacknightsgreatbigchallenge2026.blackbaud-sites.com/

And be sure to follow Zac's Great Big Challenge 2026 for more updates. 💜

27/08/2026

Starting secondary school is a big moment for any child. But when epilepsy is part of the picture, it comes with a few extra questions 💜

A bigger school. Different classrooms. New routines. Busier timetables. For a young person living with epilepsy, that shift can introduce new triggers, new staff who don't yet know their condition, and a much bigger ask of their independence.

If you're preparing for your child to head into secondary school, take a look at our top tips to make sure the right support is in place for them. And for a fuller guide on how to prepare your child for this transition, click here: https://www.youngepilepsy.org.uk/blog/moving-primary-to-secondary-school-with-epilepsy 🔗

26/08/2026

"Some schools will take the extra step, and it means a lot."

In this clip from our latest Let's Talk About Epilepsy podcast episode, Hattie, Spike and Sophie from our Youth Voice Network discuss the challenges many young people with epilepsy can face in education.

They share experiences of being excluded from trips, activities and opportunities because of a lack of understanding about epilepsy, while also highlighting the positive impact schools and colleges can have when they put the right support in place.

Every child and young person deserves to feel included, supported and able to take part in the opportunities that matter to them.

🎧 Listen to the full episode of the Let's Talk About Epilepsy podcast now on Spotify, YouTube, Apple Podcasts and all major streaming platforms.

Remember epilepsy is a highly individualised condition. The information, experiences and views shared in this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice. Always consult a qualified healthcare provider for personalised support.

If you're feeling sad, worried or lonely, text PURPLE to 85258 to start a conversation with a trained Shout volunteer 24/7.

21/08/2026

When questions about epilepsy arise, families need information they can trust.

As more people turn to AI tools for health information, we're supporting calls for stronger safeguards to help ensure health advice remains accurate, evidence-based and easy to find.

You can trust the health information on the Young Epilepsy website. Our information is independently accredited through the PIF TICK quality mark.

Learn more about our support for stronger safeguards around AI health information:

Young Epilepsy supports calls for stronger safeguards on AI-generated health information, helping families access trusted, evidence-based advice.

19/08/2026

"All seizures look the same."

This is a common misconception about epilepsy.

In this clip from the latest episode of the Let's Talk About Epilepsy podcast, Hattie, Spike and Sophie from our Youth Voice Network discuss why epilepsy is different for everyone. From seizure types and triggers to how seizures affect people's daily lives, no two experiences are exactly the same.

The more we understand epilepsy, the better we can support the children and young people living with it every day.

🎧 Listen to the full episode of the Let's Talk About Epilepsy podcast now on Spotify, YouTube, Apple Podcasts and all major streaming platforms.

Remember epilepsy is a highly individualised condition. The information, experiences and views shared in this podcast may not reflect those of Young Epilepsy and are not intended to replace professional medical advice. Always consult a qualified healthcare provider for personalised support.

If you're feeling sad, worried or lonely, text PURPLE to 85258 to start a conversation with a trained Shout volunteer 24/7.

18/08/2026

Spencer has lived with epilepsy for years.

When his medications stopped giving clear answers, his medical team raised the possibility of an intracranial EEG, a test used to record brain activity and help doctors decide what treatment options might come next 🧠

Nobody really prepared Spencer for what that experience would actually feel like. So he's sharing his story himself: https://ow.ly/aVFA50ZAzAp

Please note: The blog on our website includes images of surgical scars that some people may find distressing.

If you're a parent or carer supporting your child through an uncertain epilepsy journey, Spencer's story is good to read to understand more about what complex epilepsy assessment can involve 💜

17/08/2026

Molly has lived with cerebral palsy since birth. At 14, epilepsy joined the picture.

Growing up managing two conditions at once, Molly found her focus in sport. She became a long jumper and represented her country. For years, her seizures were controlled, and life felt manageable.

Then in March 2023, she had her first seizure while awake. She lost her driving licence, had to change medication completely, and found herself at her lowest point.

Here Molly shares how she found her way forward - a story that will resonate with families navigating epilepsy 💜

Read her story: https://ow.ly/CpVH50ZAzzu

14/08/2026

If your child didn’t get the A-level results they were hoping for they’re not alone.

Charlotte was in the middle of her A-level studies when she had her first seizure, and her diagnosis changed everything. She didn’t get the grades she needed for university.

But she didn’t give up.

She found a new path, ultimately studying at Edge Hill University, where she received her degree in Child Health and Wellbeing 📚

Her story is a powerful reminder that results day is just one moment. There’s more than one way forward, and your child’s future is still full of possibilities.

Share it with them to support their next journey. 💜

Read her full story: https://www.youngepilepsy.org.uk/news/charlottes-update-results-day-rejection-to-dream-career,

12/08/2026

This is your chance to join the E-CURe Network.

The E-CURe Network is a space where parents and carers of children living with epilepsy connect directly with dedicated researchers at UCL-GOS Institute of Child Health.

Your voice, your experiences and your perspective are exactly what researchers need to hear. By taking part, you'll have the chance to directly influence childhood epilepsy research that could change lives for years to come 💜

When you're ready to sign up, head to our website: https://ow.ly/m8wC50ZwyVB

Or if this opportunity sounds right for another parent or carer in your life, share this post with them 📲

(UCL Great Ormond Street Hospital and Charity)