Young Epilepsy

04/09/2026

It's time already for 🏫

Whether your child is starting a new school, or simply moving up a year group, the new academic year is the perfect chance to check the right support is in place for them.

A few small actions ticked off at the beginning of term can make a huge difference to how confident and settled your child feels once they're back in the classroom.

See our back to school to-do list to work through with as term starts. And share the Guide for Schools with your child's teachers so they have everything they need to support a student living with epilepsy: https://www.youngepilepsy.org.uk/guide-for-schools 🔗

03/09/2026

Lisa's daughter Phoebe was diagnosed with epilepsy completely out of the blue. No warning signs. No prior conditions. Just one day, everything changed.

Since then, the whole family has adjusted: strict medication routines, learning seizure first aid together, and finding comfort in connecting with other families going through the same thing.

Lisa's son Harley has seen things no child should have to see, and Lisa herself left her job to care for Phoebe full time.

"There's always going to be somebody who will advocate for you," Lisa says.

If you're at the very start of this journey, please know you are not alone. 💜

If you or your child need someone to talk to, Shout is there any time, day or night. Text PURPLE to 85258 for free, confidential support.

Read Lisa and Phoebe's full story:https://www.youngepilepsy.org.uk/story/why-no-family-should-feel-alone-our-epilepsy-journey

02/09/2026

Now's the time to sign up 👀

Our September online youth groups are a brilliant opportunity for young people living with epilepsy to connect with others who truly understand what life with epilepsy looks like. For many young people, finding that community can make a real difference.

If you think your child would benefit from meeting others who get it, see what's on this month and encourage them up to sign up for anything that feels right: https://www.youngepilepsy.org.uk/whats-going?page=0

02/09/2026

Feeling stressed, overwhelmed, or unsure where to start? 💜

MyEpilepsyMind is a free online self-help course that helps young people build practical wellbeing skills at their own pace.

Swipe to see what MyEpilepsyMind has to offer. ➡️ https://www.youngepilepsy.org.uk/myepilepsymind-digital-self-help-resource

31/08/2026

Final call for these Ultra Challenges 📣

If you've been thinking about taking on one of these ultra challenges, now is the time to register before you miss the chance.

Choose from trekking London's most iconic bridges, conquering the South Downs coast, or following the Thames from Putney to Henley. Every step you take raises vital funds for children and young people living with epilepsy.

Don't leave it too late - register now. 👇
- South Coast Ultra Challenge (5 to 6 September): https://www.youngepilepsy.org.uk/get-involved/challenge/south-coast-ultra-challenge-0

- Thames Bridges Trek (12 September): https://www.youngepilepsy.org.uk/get-involved/challenge/thames-bridges-trek

- Thames Path Ultra Challenge (12 to 13 September): https://www.youngepilepsy.org.uk/get-involved/challenge/thames-path-ultra-challenge

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.