Pediatric Epilepsy Surgery Alliance

10/10/2026

Today is World Mental Health Day, the perfect time to remind you that almost half of parents of children who have had any type of neurosurgery have symptoms of post-traumatic stress disorder that rise to the level of a clinical diagnosis.

Take a moment to read about our mental health resources and seek help if needed.

How Does Epilepsy Surgery Affect Family Mental Health? When a child goes through epilepsy surgery, the impact can ripple through the whole family. It often brings heavy emotional stress for parents, anxiety for siblings and extended family members, and for some, a true medical trauma

10/02/2026

Every parent’s story has the power to change lives. When you share your child’s epilepsy surgery journey, you help others feel less isolated and show them that hope and healing are possible.

Learn how to share your story here:

Share your story Together we can create a community of courage Every family’s epilepsy surgery journey is unique, and your voice can bring hope, encouragement, and guidance to others walking the same path. By sharing your experience, you help raise awareness, support

10/01/2026

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/Jnkf50Xewpp

09/25/2026

When seizures are uncontrolled and medications fail, parents are forced to make complex, high-stakes decisions. Our parent support navigators are ready to talk to you and help. Today, one of our newest parent support navigators, Zhenling, shares her story:

"My son Max was born with a large, bruise-like red mark covering one side of his face. With the help of an experienced medical team, we quickly learned that the mark wasn’t a bruise but a sign of a rare neurological condition called Sturge-Weber syndrome. Max began having seizures at 11 months old.

They were severe and often prolonged, sometimes leaving him in the intensive care unit for days while doctors worked to stabilize him. He continued to experience breakthrough seizures despite having maxed out two seizure medications.

A few months before his second birthday, Max underwent a right hemispherectomy, a surgery that completely disconnected the right side of his brain. The change afterward was remarkable. He learned to walk around age three and to talk around age four. Max is now six years old. Although he continues to face challenges, he has made incredible progress. We are so proud of him and cannot wait to see all the amazing things he will achieve in the future."

When seizures are uncontrolled and medications fail, parents are forced to make complex, high-stakes decisions while managing fear, exhaustion, and uncertainty. Having walked down that path, I’d love to share my experience to provide support during an overwhelming time. No family should have to navigate epilepsy surgery alone.”

Languages spoken: Chinese (Mandarin), English

Connect with Zhenling or any parent support navigator today: https://ow.ly/ZBxz50ZRA12

09/24/2026

Travel expenses should never stand in the way of getting your child expert care. When medications aren't stopping seizures, a full surgical evaluation is a critical next step to understand all available treatment options. New research shows that children live longer after epilepsy surgery, but we know traveling to specialized centers can put a heavy financial strain on your family.

That’s why the Dreams for Danny travel scholarship program exists.

To date, we’ve awarded over $100,000 in travel financial aid to families navigating pediatric epilepsy surgery evaluations. Click the link below to learn more about eligibility and apply for the Dreams for Danny program today:

👉 https://ow.ly/gSCO50ZRbAB

Please like and share this post! Every share helps us connect with a family who needs travel support for their child's care.

09/22/2026

Hispanic parents whose children hace 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 today!

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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.

https://epilepsysurgeryalliance.org/about/programs-resources/guides/programa-de-apoyo-de-familia-a-familia/

09/17/2026

New research using data from our Global Pediatric Epilepsy Surgery Registry looked at what really happens after hemispheric surgery for Rasmussen's encephalitis, based on real stories from 37 caregivers who've been through it.

Link in first comment.

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