Pediatric Epilepsy Surgery Alliance

01/05/2026

Another parent is searching right now for the hope your story can give. If your child has had epilepsy surgery, consider sharing your journey with us. Your words and experiences can comfort families facing the same difficult decisions.

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,

01/01/2026

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/72E950XewmT

12/31/2025

Our latest blog post highlights our top five moments of real impact in 2025 - all thanks to supporters like you.

There's still time to donate - your gift funds our research, programs, and support services for the incredible communities of families we serve.

❤️ GIVE at bit.ly/PESADONATE

Link in first comment!

12/29/2025

We're grateful to our donors for believing in the children we serve! In 2025, we were able to award $42,000 in financial aid to families in need, train 140 school staff in 16 states about the educational impacts of epilepsy surgery, pair 90 parents with our trained parent support navigators who provide information and support, and educate hundreds of clinicians about how to help parents navigate decision-making and trauma they may experience as they consider epilepsy surgery for their child.

And this is just the tip of the iceberg! Keep an eye out for our 2025 impact report that we'll share in early 2026.

There's still time to donate to support our programs and research - any amount will go far to help the families in our community. Donate at https://bit.ly/PESADONATE

12/23/2025

Parenting drug-resistant epilepsy is not a “stressful season.” It can be relentless. A study following families during the epilepsy surgery evaluation journey found that about 1 in 3 parents reported moderate to severe anxiety, and more than 1 in 3 reported moderate to severe depression at least once.

We have some tools that can help you get through this. Caregiving can take a toll, but we're here for you. We see you. Take a few minutes for yourself.

Resources in the first comment.

12/18/2025

Joining our patient registry helps turn families’ real-life experiences into data researchers can use to improve care.

Your child’s medical record does not capture everything that matters, like learning, behavior, speech, mobility, sleep, school supports, and quality of life. When many families share this information in the same way, researchers can spot patterns and answer practical questions about outcomes and what support helps most.

More families means more accurate results. Your privacy is protected, your information is not used for fundraising, and being contacted about future research is optional.

To join, go to epilepsyregistry.org and click “Register your child.”

12/06/2025

Infantile Spasms Awareness Week Day 6:

Every moment matters. Infantile spasms require rapid recognition and referral. Treatment within the first week can change a child’s life.

Learn more at infantilespasms.org

12/04/2025

Infantile Spasms Awareness Week, Day Four:

For babies with drug‑resistant infantile spasms and a clear problem on one side or in one area of the brain, resective or ablative epilepsy surgery is now a standard, evidence‑based option.

It is not a last resort.

Across many studies, about 2 out of 3 children with epileptic spasms who have surgery become seizure‑free.

🔗 bit.ly/ISSurgery

12/03/2025

Infantile Spasms Awareness Week, Day 3:

In 2020 we were asked by the Infantile Spasms Action Network to make another honest, raw, and simple video about infantile spasms. This time, we were tasked with raising awareness about the delay to diagnosis that so many families experience when they suspect their baby is having infantile spasms.

Our advocacy partners, ,shared this video on their YouTube channel. Today, it has over 4.2 million views.

Together we can get more babies to diagnosis faster. Please share this video to spread awareness.

If you experienced a delay to diagnosis when you suspected your baby had infantile spasms, please share your story below.

12/02/2025

Infantile Spasms Awareness Week, Day Two:

Our Director of Patient and Family Advocacy, Audrey Vernick, bravely shares her family’s excruciating journey to epilepsy surgery to treat her son’s infantile spasms. Despite being told by medical providers that surgery was a last resort, her family fought tirelessly to advocate for the care their son needed.

Their story reminds us of the importance of informed decisions and the strength it takes to challenge the status quo for the sake of a child’s future. If medications aren't stopping your child's infantile spasms, ask to be referred for a surgical evaluation to see if surgery can stop or reduce them.

Remember - asking for a surgical evaluation doesn't mean that you have decided your child will have surgery. It means you have decided to understand all available options so that you can make an informed decision about the best treatment for your child.

Let’s continue raising awareness and supporting families facing this difficult path. Please share!

🔗 https://ow.ly/zTFf50XyTmu