Pediatric Epilepsy Surgery Alliance

04/07/2026

Many children in our community face a very challenging road. Sometimes multiple brain surgeries don't take away the seizures altogether. But reducing the seizure burden can often be enough to greatly improve a child's quality of life.

Meet Sutton, who's now thriving even though she's not 100% seizure-free.

Drop a heart in the comments for this sweet, brave girl!

04/06/2026

What do parents and caregivers say about our family conference? Here are just a few quotes submitted over the years.

🎟️ Early bird ticket sales end Aprli 30th. Don't miss out on the best opportunity to learn from experts, participate in research, and surround yourself with a community that gets it.

🔗 bit.ly/PESA2026

04/03/2026

Has your child had epilepsy surgery? Your experience could be the light another parent is searching for. Sharing your journey, whether through a short video or a written reflection, helps families feel less alone and gives them courage to take the next step.

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 other parents,

04/02/2026

We are honored to have Dr. John Ragheb, Chief of Surgery at Nicklaus Children’s Hospital, joining us for the 2026 Pediatric Epilepsy Surgery Conference! Dr. Ragheb is a pioneer in the use of MR-guided focused ultrasound in the treatment of hard-to-control epilepsy, This technology allows surgeons to target deep brain lesions, like those in hypothalamic hamartoma, without a single incision.

Dr. Ragheb is just one of many experts at our conference who can answer your questions. Come meet the doctors who are moving the needle for our kids!

📍 Where: Kalahari Resort, Round Rock, TX
🗓️ When: July 17-18, 2026
🚨 Deadline: Early Bird ticket sales end April 30th!

Go to bit.ly/PESA2026 to learn more!

04/01/2026

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/lwRG50XewnZ

03/30/2026

Epilepsy surgery decisions are made with fear, hope, exhaustion, and love. Our family conference was built for parents exactly where you are: weighing options, recovering from surgery, or still searching for answers.

Get more info here bit.ly/PESA2026

03/27/2026

If you're raising a child with hard-to-control epilepsy, your focus is on their treatment. But many parents tell us they secretly worry about how all of this is impacting their other kids.

Siblings walk this journey too, and often they're the quietest observers in the family. They pick up on the stress in the house. They worry during hospital trips. Many try hard not to add to the load you are already carrying (we hear this a lot).

This is why we've launched our new Sibling Resources page. We want to make sure that every member of the family is seen and supported.

Today, we share a powerful essay from James DiBitetto. He writes about growing up with his brother, Gavin, through multiple brain surgeries. He shares how he watched his brother lose the ability to play basketball, but found a way to connect through video games. His story shares what is so often left unsaid.

As the only caregiver-led organization with lived experience of the pediatric epilepsy surgery journey, we know you're carrying a lot. We're here to make sure you don't have to carry it alone.

🔗 Read James' full story and how you can explore practical tools and conversations starters for siblings of all ages: https://ow.ly/TY5I50YzNkB

03/26/2026

Today is Purple Day, a global day of epilepsy awareness. Did you know that about 1 in 3 kids still have seizures even after trying multiple medications? This is called drug‑resistant epilepsy, and it’s a sign that it’s time to think beyond more meds.

But many children are NOT referred for an epilepsy surgery evaluation until years after seizures become drug‑resistant. During those years, seizures can harm learning, behavior, and quality of life, and raise the risk of emergencies and sudden death.

This year, let's make Purple Day more than just about epilepsy awareness. Let's make it about action.

Children with epilepsy shouldn’t have to wait years for answers. If your child has tried two seizure medicines and is still not seizure‑free, ask your neurologist:

“Could my child be evaluated at a Level 4 pediatric epilepsy center to see if surgery or other advanced treatments might help?”

Remember - asking for a surgical evaluation does not mean you've decided your child will have epilepsy surgery. It means that you're asking to understand all treatment options that may help your child.

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03/24/2026

Our family conference schedule is live! You can start planning your weekend, see the sessions we have lined up, and get a feel for what’s ahead.

In 2024, our most popular session was the "Ask Me Anything" young adult panel. Eight young adults who had epilepsy surgery (all hemispherectomy) answered questions from the audience and gave sage advice to parents. The most common theme? "Believe in us" and "forget about the hand".

This year’s program features two 'Ask Me Anything' panels: the first highlights young adults sharing their childhood epilepsy surgery experiences, and the second offers adult perspectives.

Early bird ticket sales end April 30th at midnight Pacific time!

📆 July 17–18, 2026

📍 Round Rock, Texas, at the Kalahari Resort

🎟️ Early bird ticket sales end April 30th

🔗 in first comment

03/20/2026

Don't miss the 7th Annual Purple Day Expo in Orlando! If you have questions about surgical treatments for epilepsy, make sure to attend this informative session with our Executive Director, Monika Jones, and Dr. Shelly Wang, pediatric neurosurgeon at Advent Health in Orlando.

Stop by our booth to get key resources and support. We can't wait to see you there!

🗓️ Saturday, March 28, 2026

🕗 8 a.m. - 4 p.m.

📍 Disney's Coronado Springs Resort

🔗 Register: https://purpledayeveryday.org/events/seventh-annual-purple-day-expo/

03/02/2026

If medication isn’t controlling your child’s seizures, an epilepsy surgery evaluation is the next step. But what’s involved in the process? Join Boston Children’s Hospital’s Dr. Scellig Stone and our executive director, Monika Jones, this Wednesday for an informative webinar about epilepsy surgery. There’s still time to register!

Don't miss Monika Jones, Founder & Executive Director of the Pediatric Epilepsy Surgery Alliance and leading pediatric surgeon, Dr. Scellig Stone, discussing drug-resistant and timely surgical referrals.

Register for free: https://bit.ly/4pZ03uZ

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03/02/2026

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/XZ3G50XewnY