Pediatric Epilepsy Surgery Alliance

02/28/2026

Today is Rare Disease Day, a global day of raising awareness about rare diseases. Some of the rarest epilepsies affect only a handful of children in an entire city. If you love someone rare, we see you advocating and showing up every, single day for your child.

❤️ Drop a heart in the comments if you love someone rare. If you want to share your child's rare epilepsy journey, see the link in the first comment.

02/27/2026

Fifteen years ago, we started with one simple goal: fund research after hemispherectomy surgery.

Then we learned what families really needed: clear info about all epilepsy surgery options, honest outcomes, real connection, and support for life after surgery. Since 2016, this community has become a lifeline for thousands of families holding each other up. Today, clinicians are listening to our voice and researchers are pushing for better answers.

To kick off our 15th year, we have a rare chance to do twice as much. One of our founding board members is matching every donation, dollar-for-dollar, up to $25,000. That means your gift goes 2x right now. Your donation helps make sure:

❤️ A family doesn’t have to choose between a plane ticket to a specialized epilepsy center and paying their bills

❤️ A parent hearing “drug-resistant epilepsy” gets a call that starts with, “I’ve been there. I’m with you.”

❤️ Families at our conference in Round Rock, Texas can connect, learn, and participate in research.

Help us reach $25,000 and unlock the full match. Double your impact by donating at the link in the first comment.

02/27/2026

Is your child’s epilepsy medication not working? A new study shows that the RNS device can help in ways you might not expect. 8 out of every 10 kids in the study saw a big drop in seizures after two years. Even better, 93% of parents reported that their children showed improvements in thinking and learning skills.

🔗 to our blog post about this new study is in the first comments

02/18/2026

Tickets are on sale NOW for the Pediatric Epilepsy Surgery Conference + Family Reunion. If your child has medication-resistant epilepsy, or has had any type of epilepsy surgery (including neuromodulation), this conference is for you!

More than 30 sessions on key topics, including:

✅ recent advances in epilepsy surgery
✅ minimally invasive epilepsy surgeries
✅ medical trauma in families affected by brain injury
✅ auditory processing after epilepsy surgery
✅ transition planning for students with complex medical needs
✅ understanding neuropsychological testing before and after epilepsy surgery

You can also participate in important research.

We'll have a special track for young adults who had epilepsy surgery in childhood covering topics like knowing your rights as a disabled adult, and how to navigate tough conversations around alcohol, dating, and college life.

Enjoy a fun-filled weekend at the Kalahari Resort in Round Rock, Texas, while you learn from some of the world's top experts in the field of epilepsy, neurosurgery, rehabilitation, life planning, and other relevant topics.

Just go to pesalliance.org to learn more!

02/13/2026

When Kevin’s daughter Kaitlyn was diagnosed with Rasmussen’s encephalitis, their family faced a journey filled with excruciating decisions and uncertainty. After two partial resections and a hemispherectomy, Kaitlyn is now thriving as a college graduate - and applying to graduate school! She's proof that there is hope and life after epilepsy surgery.

Kevin has served on our board of directors, and now serves as a Parent Support Navigator, offering guidance and understanding to families navigating similar paths. His message: “You’re not alone. There is hope, and better days are possible.”

And we have great news - Kaitlyn is on our board of directors and now serves as our corporate secretary!

If you’re seeking support or want to connect with someone who’s been there, learn more about our Parent Support Navigator program here at https://ow.ly/oHrJ50YeiF3

02/12/2026

🔗 https://ow.ly/OKN150YefIx

It's Seizure Action Plan Awareness Week! Does your child have a seizure action plan? It's critically important, even if your child is no longer having seizures after epilepsy surgery.

02/10/2026

🔗 bit.ly/4arhbnn

Today is International Epilepsy Day, a global day of epilepsy awareness. This year, we're taking an because families deserve answers sooner:

By December 31, 2026, we will help families understand that epilepsy surgery isn’t only for “after everything fails” by sharing simple, reliable information on when to ask about an evaluation, so that fewer families wait years to get answers.

A big thing we want parents to know: an epilepsy surgery evaluation does NOT mean you’re saying yes to surgery. It means you’ve decided to get more information so that you can make a decision about next steps.

If seizures are still happening after two seizure medications have been tried, you can ask:
“Can you refer us for an epilepsy surgery evaluation so we understand all our options?”

Read our blog post with the research behind this pledge and what it means for families. Share it and help us change the conversation. And don't forget to tag your post with .

02/06/2026

🔗 https://bit.ly/4kFb2c9

After hemispheric surgery (functional hemispherectomy, hemispherotomy, and anatomical hemispherectomy - as well as TPO) we know that hearing can be normal but listening can still be hard. (And you should read this if your child has had any surgery that removes, disconnects, or ablates a temporal lobe - even in part.)

This review co-authored by our board chair Dr. Taylor Abel, Chief of Neurosurgery at UPMC Children's Hospital of Pittsburgh, looks at auditory processing after hemispheric surgery (including hemispherectomy and disconnective surgeries). The key point: some kids may hear sounds clearly and pass a basic hearing test, but their brain can struggle to make sense of speech, especially in real-life noise like classrooms.

What that can look like:

* Trouble understanding speech in noisy places
* Difficulty locating where sound comes from
* Missing fast directions or parts of conversation

The authors emphasize that we don’t evaluate auditory processing often enough after surgery, which means some kids miss helpful services.

If your child had hemispheric surgery - or any epilepsy surgery that removes or disconnects the temporal lobe, even in part - consider asking about:

- Auditory processing testing (not just a basic hearing test)
- School supports: including preferential seating, written directions, extra processing time
- FM/DM classroom listening support

02/04/2026

🔗 https://bit.ly/PESADONATE

When we started 15 years ago, we had one simple goal: to fund research after hemispherectomy surgery. In 2016, we realized that parents of children with drug-resistant epilepsy needed to know about all different types of epilepsy surgeries, understand outcomes after these procedures, connect with other families, and navigate life after surgery.

Since then, this community has become a lifeline. Our families holding each other up, clinicians listen to our lived experiences, and researchers chase better answers.

To kick off this milestone year, we have an incredible opportunity to do twice as much.

One of our founding board members knows exactly what it’s like to navigate these high-stakes moments. To celebrate 15 years of hope, he is matching every single donation, dollar-for-dollar, up to $25,000.

If you’ve ever wanted to make your support go further, this is the moment.

Your gift means:

A family doesn’t have to choose between a plane ticket to a specialized epilepsy center and their monthly bills;

A parent getting a life-changing diagnosis gets a phone call from someone who says, "I’ve been there. I’m with you."

Families coming to our conference in this year in Round Rock, Texas, can sit down to a warm meal and focus on learning;

This Valentine’s Day, we’re celebrating the kind of love that shows up in hospital hallways and conference rooms. Can you help us reach our $25,000 goal?

🔗 Double your impact here: https://bit.ly/PESADONATE

02/04/2026

Together, our stories build a community of courage. By sharing your child’s epilepsy surgery journey, you help raise awareness, inspire families, and show that no one has to walk this path alone.

Share your story:

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,

02/02/2026

🔗 https://ow.ly/HHHC50Y6PrU

Whether it's for a epilepsy monitoring unit stay, or for surgery, our guide is full of advice from other parents as well as helpful links to resources.

01/30/2026

Exciting Research Update for our Hemi-Community!

Many of you helped make history by participating in eye-tracking research at our family conference in 2024. Your involvement is turning lived experience into scientific breakthroughs!

New published research using data from you at our 2024 conference found that after a hemispheric surgery, the brain adapts in incredible ways. While one hemisphere can support eye tracking, it doesn't work quite like a typical two-hemisphere system. Children often have a "bilateral and asymmetric" deficit. This means their eyes track slower in one direction and faster in the other.

Why we care about this:

If you’ve noticed your child struggling to keep their place or "jerky" eye movements while reading, there is a biological reason for this. To stay on target, their brains use frequent, high-speed "catch-up" jumps called saccades. It's how the brain compensates for the loss of one hemisphere.

What schools need to know:

Precise eye movements are essential for getting visual information accurately. Because our children’s eyes are working overtime to "catch up" to what they are seeing, they need:

Extra time: Educators should use strategies that allow their eyeballs time to "land" on a word and stabilize before moving to the next.

Stay tuned for a summary of this research and an update on strategies teachers can use. And don't forget we offer free school training. Sign up on our website to get started.

Read the research > 🔗 https://pmc.ncbi.nlm.nih.gov/articles/PMC12721354/

Data from the journal Cortex, 2025, all rights reserved.