Pediatric Epilepsy Surgery Alliance

09/10/2026

We know that pediatric epilepsy surgery can feel overwhelming, full of difficult choices and heavy conversations. That’s why researchers at University College London are on a mission to make those pre-surgery discussions better and more supportive for every parent facing that road.

If your child has gone through epilepsy surgery, your experience matters! By taking a quick 10-minute survey, your journey can shape how doctors talk to and support new families.

Your feedback is a powerful way to give back, and could make all the difference for the next family.

Take the survey here: https://ow.ly/e8XQ50ZLtbg

09/03/2026

Navigating a child’s epilepsy diagnosis and making big medical decisions can feel overwhelming, and nobody understands that journey quite like a parent who has walked in those exact shoes.

When Thanh and her family were facing the daunting process of evaluating epilepsy surgery for her son, Aiden, finding guidance and peer support made all the difference in making an informed, confident choice.

After experiencing firsthand how critical that compassionate guidance was during such a difficult time, Thanh stepped up to give back. Today, she serves as a Parent Support Navigator, helping walk alongside other families through the complex decisions and surgical evaluation processes.

Thank you Thanh for your dedication to our community!

You can connect with a parent support navigator here: https://ow.ly/eEHG50ZJ2OP

09/01/2026

Everyday life is full of tasks designed for two hands. But the right gadget can make a huge difference! We put together 120+ tools and products for one-handed living, especially helpful for children and adults in our community with hemiparesis after hemispherectomy or other surgeries that affect the motor strip.

Find the list here: https://ow.ly/MrNb50ZHZNn

09/01/2026

Parenting after epilepsy surgery is full of questions. How will my child learn? What school supports are available? How do I advocate for their needs?

We've got great news - you don’t have to figure it out alone. Our Education After Epilepsy Surgery Facebook group is a private, welcoming space for families to share experiences, ask questions, and learn from one another.

It's also where we share some of our most important resources to help you navigate all things school after epilepsy surgery.

Get started: https://ow.ly/gNYw50Xewpj

09/01/2026

This is why sharing matters. ❤️

A mom posted on TikTok that she found our resources because another mom shared them with her. You never know who needs this information, or who knows someone who does.

Please keep sharing. It really does make a difference.

08/27/2026

We talk a lot about vision after big surgeries like hemispherectomy. But what about hearing and listening? After surgeries that remove or disconnect one temporal lobe, auditory processing - how the brain processes sounds and words - will be affected.

In this clip, audiologist Amanda Levy discusses the importance of an ideal listening environment in school. For one student after hemispherectomy, this meant sitting close to the teacher and being able to see her mouth when she was speaking.

Full video here to learn how you can advocate for the right assessments and supports for your child in school: https://youtu.be/1DmA9tHr_Mo?si=ZwXkOTZ2kmoKBY9c

08/25/2026

https://ow.ly/EpeK50ZFrir

Hispanic families facing drug-resistant pediatric epilepsy face major barriers to life-changing surgery. Studies show Hispanic children are significantly less likely to undergo surgical evaluation or cranial surgery compared to non-Hispanic White children, often facing long referral delays, language barriers, and limited access to specialized epilepsy centers.

You can help us break down these barriers by volunteering to be a parent support navigator. If your child has had epilepsy surgery and you speak Spanish, apply to be on of our parent support navigators.
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Las familias hispanas que enfrentan la epilepsia pediátrica resistente a medicamentos tienen grandes barreras para acceder a una cirugía que puede cambiarles la vida. Los estudios demuestran que los niños hispanos tienen significativamente menos probabilidades de someterse a una evaluación quirúrgica o a una cirugía craneal en comparación con los niños blancos no hispanos, enfrentando con frecuencia largos retrasos en las referencias médicas, barreras de idioma y un acceso limitado a centros especializados en epilepsia.

Tú puedes ayudarnos a romper estas barreras al ofrecerte como voluntario(a) para ser un Navegador de Apoyo Familiar. Si tu hijo(a) ha tenido una cirugía de epilepsia y hablas español, solicita ser uno de nuestros navegadores de apoyo.

08/24/2026

Now that school's back in session, you're probably wondering whether your child's educational team will understand your child's strengths and challenges. Educators can take our self-paced courses to learn more about:

✅ Effects of left hemispherectomy: An Introduction for the School Team
✅ Effects of right hemispherectomy: An Introduction for the School Team
✅ Supporting students after frontal lobe epilepsy surgery

Thanks to the generosity of our donors, these courses are free, and teachers keep telling us how much they've helped. Share the link in the first comment with your child's teacher, case manager, or anyone on their team who could use it.

08/13/2026

With many U.S. schools back in session soon, we know you're thinking about your child's IEP. Our free online course walks you through the whole thing step by step. And because so many of our kids come out of surgery needing a completely different kind of support than they did going in, there's a section specifically on learning after epilepsy surgery.

The course is free, thanks to the generous support of Amgen , and it's now available in English, Spanish, Mandarin, Tagalog, and Vietnamese.

Now Available in 5 Languages! We are committed to making our resources accessible to all families. We are proud to announce that our courses now include comprehensive language support for: English • Español • 普通话 (Mandarin) • Tagalog • Tiếng Việt

08/12/2026

📣 RESEARCH ALERT!

A new multi-hospital study from the Pediatric Epilepsy Research Consortium found that when children with drug-resistant epilepsy face delays getting referred for a surgical evaluation, their seizure outcomes are worse. That's a hard finding for parents in our community to face, but it's important to share this with you so that you can take action.

Current guidelines say that if a child has tried two seizure medications without full seizure control, it's time to ask about a surgical evaluation, NOT wait and see. Advocating for that referral early can change the trajectory of your child's quality of life.

If you want to talk to one of our parent support navigators about the surgical evaluation process. Just click on the link in the first comment to get started.