Pediatric Epilepsy Surgery Alliance

06/16/2026

Orton-Gillingham is a leading instructional approach for supporting vulnerable readers. At our 2024 conference, Dr. Joanna Christodoulou, member of our scientific advisory board and director of the Brain, Education, and Mind Lab at MGH Institutes, gave a terrific talk about supports to help your child learn how to read after big epilepsy surgeries like hemispherectomy.

Our family conference is the best way to learn from experts about all things related to your child's epilepsy surgery. Sign up at bit.ly/PESA2026 - hurry, we're almost sold out!

Watch the full video on our YouTube channel.

06/16/2026

We are so deeply moved by a very generous donation that came in today, and the beautiful note that came with it.

To these amazing grandparents, and to everyone who believes in the children we serve - thank you! We couldn’t do it without our incredible community.

06/10/2026

One of the hardest things to do when parenting a child with neurological differences is understanding how to keep the child safe and preparing them for adulthood.

Aimee Day, Director of Person-Centered Planning and Family Outreach at the Center on Disability and Development at Texas A & M University, and a Person-Centered Thinking Mentor Trainer, joins our family conference to reflect on her instinct to protect, while her son Ty will share what it felt like to want more independence.

Together, they will explore dignity of risk, trauma-informed support, and person-centered planning.

Parents will learn how to gradually shift from protector to partner, helping their child build confidence, self-advocacy skills, and a fulfilling adult life without losing sight of health and safety.

Learn more: https://ow.ly/8O9350Z9IXr

06/04/2026

We’re looking for parents and caregivers to share their child’s epilepsy surgery journey. Whether you prefer writing or recording a video, your story matters and can inspire others to seek help and answers.

Start 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

06/01/2026

Planning a secure financial future for your medically complex child can be daunting. That’s why we’re excited to welcome Mary McDermid to our family conference! Not only is she a rare epilepsy mom - she’s also the co-founder of All Needs Planning, a firm that provides real world special needs planning for families.

Mary will discuss special needs trusts, ABLE accounts, and comprehensive approaches to ensuring your child’s financial future.

🎟️ Get your tickets for our conference and learn more about this incredible event at bit.ly/PESA2026.

And don’t forget to book your room now - our room block is selling out fast!

06/01/2026

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/lFSK50Xewof

05/28/2026

As our kids grow up, one of the biggest things constantly in the back of our minds is: What does the future look like for them? If you have a child with complex medical needs or epilepsy, thinking about the transition from school to adulthood and finding a meaningful career can feel incredibly daunting. There are just so many moving pieces.

If you're trying to figure out how to navigate all of this,don't miss Roni Jo Frazier’s upcoming session at our summer conference "Health, Hope, and the Future: Transition Planning for Students with Complex Medical Needs."

Roni Jo is a Certified Autism Specialist and lifelong special education administrator who has spent her career helping families bridge the gap between school and independence. She deeply understands how the systems work and how to actually build programs that support our kids' full potential.

If you want some real, practical guidance on how to plan for your child's future, think about grabbing a spot at the conference. It’s comforting to know we don't have to figure it all out by guesswork.

👉 Register for the conference here: https://ow.ly/AcSX50Z2uwv

05/28/2026

Participate in Epilepsy Research at NYU - Online!

The Hartley Lab at NYU is seeking participants for a new study focused on memory and cognition after epilepsy surgery.

🧐 Who can join? Children or adults who have had epilepsy surgery
🎯 The Goal: To improve our understanding of long-term cognitive outcomes and enhance patient care.
💻 The study can be completed online and will involve playing games in a web browser.

Sign up at https://spark.hartleylab.org/or email the Hartley Lab at [email protected]

05/26/2026

If you’re navigating life with a child who has epilepsy, you already know how exhausting and isolating it can feel. That’s why we're excited to share that .devotedmam Tiffany Townsend is speaking at our Pediatric Epilepsy Surgery Conference and Family Reunion!

If you don't know Tiffany, she’s a mom, an advocate, and the author of Challenging the Spectrum, where she writes beautifully and honestly about her family’s journey with autism, epilepsy, and SUDEP. She’s made it her mission to create a safe, uplifting space for mothers and caregivers to just breathe, connect, and feel completely understood.

Sometimes, the best medicine is just being in a room with people who truly "get it." This conference is a rare chance to learn from medical experts, but more importantly, to find your community and realize you don’t have to walk this path alone.

👉 Register for the conference here: https://ow.ly/wH6C50Z2unf

05/25/2026

May is Mental Health Awareness Month, and we want to make sure you know of all the resources we have to help you and your family navigate this journey. Just click on the link below to access all our mental health + medical trauma resources.

You're not alone in this. We see you.

🔗 https://ow.ly/g9b950Z2tSp