Pediatric Epilepsy Surgery Conference 2026

This session will help families and self-advocates understand how to plan for the transition from school-based supports to adult life for students with complex medical needs. It will cover key issues such as healthcare transition, education, employment, daily living, benefits, and long-term supports, with a focus on building a realistic and hopeful plan for the future. Families will leave with a better sense of what steps to take, what systems to prepare for, and how to support their child’s growth into adulthood.

Session times are placeholders for now. Final times will be set once we confirm clinician schedules.

Kids healing from concussions or brain surgery often face hidden struggles with balance and vision. These issues can make it hard to focus in class, keep up on the playground, or even walk around safely. This session covers what these signs look like, why doctors sometimes miss them, and how families can get the right testing and therapy to help their child recover.If you've ever felt "sea legs" after getting off a boat or felt dizzy after spinning in circles, you've experienced these systems in action.

Terms and phrases that will be discussed in this session:

1. Vestibular (The Balance System)
Think of the vestibular system as your body’s internal GPS and level. It is located in the inner ear and tells your brain where your head is in space.

• What it does: It helps you keep your balance while walking on uneven ground and tells you if you are moving up, down, or sideways.
• When it’s "off": A child might feel dizzy, nauseated, or unsteady. They might seem clumsy or get motion sickness more easily than usual.

2. Oculomotor (The Eye-Movement System)
"Oculo" means eye, and "motor" means movement. This system involves the muscles and nerves that allow your eyes to work together as a team.

• What it does: It allows you to track a moving ball, shift your gaze from a notebook up to a whiteboard, and read a line of text without losing your place.
• When it’s "off": A child might see double, experience blurry vision, or get headaches when reading. They might "skip" lines while reading or find it exhausting to look at screens or bright lights.

Session times are placeholders for now. Final times will be set once we confirm clinician schedules.

Many people who have had a hemispherectomy, or other surgeries which remove or disconnect an occipital lobe, live with homonymous hemianopia. One of the biggest questions families ask as kids become teens and young adults is: Can they ever drive safely and legally? In this session, Alex Bowers, PhD and Jing Xu, PhD will share what we currently know about driving with homonymous hemianopia and factors that are important for real-world safety.

Dr. Bowers and Dr Xu collected study data with our community at the 2024 Boston conference, where teens and young adults completed vision and driving-related testing. They will return to the conference to report back to families, explain what the testing measured, and share what the results suggest and where the research is headed.

Families will leave with a clearer understanding of how driving can be evaluated for people with visual field loss and what questions to ask your eye care team, as well as practical strategies that can help with everyday mobility, whether or not driving is the right goal.

Session times are placeholders for now. Final times will be set once we confirm schedules.

We often focus so much on the child having surgery that their brothers and sisters can become the "quiet observers" of the family. Siblings are deeply affected by epilepsy and surgery, even when they seem “fine.” They feel the worry and the hope, but they don’t always know how to put those feelings into words.

In this session, we will share key insights from The Alliance’s sibling initiatives about what brothers and sisters are actually thinking and what they need most. We’ll explore the complex mix of emotions they face, from anxiety over traumatic memories to the pride of watching a sibling recover. We will also highlight the unique strengths of siblings who often grow into resilient, empathetic advocates and lifelong companions.

Following the talk, a panel of parents will share candid, firsthand experiences on balancing life between their "surgical" and "non-surgical" children.

You’ll leave with practical tools to:

• Start honest, age-appropriate conversations that make siblings feel seen and heard.
• Validate their experience, acknowledging that what they felt truly mattered.
• Support their strengths, helping them navigate being the “helper” or the “strong one” without losing their own childhood.
• Prepare for the future, understanding how the sibling bond evolves from childhood companions to adult advocates.

Plenty of time will be reserved for Q&A, so you can bring your own questions and situations.

Being a caregiver to a child with epilepsy requires a level of strength that can be exhausting. Even the strongest hearts need a moment to simply breathe. Join fellow mom and advocate Tiffany Townsend, author of Challenging the Spectrum, for a session dedicated entirely to you: a space to exhale, share your story, and find common ground with women who truly ​"​get it."

Through creative journaling and scrapbooking, we’ll process the hurdles we’ve cleared and the lessons learned the hard way. Whether you’re a seasoned pro or brand new to the surgery journey, come for some "Texas bling" and leave with a meaningful, handmade reminder that your story matters and you aren’t walking this road alone.

Aimee Day and her son Ty share an honest look at the tension between keeping a child safe and preparing them for adulthood. Aimee will reflect on her instinct to protect, while Ty will share what it felt like to want more independence. Together, they 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.

Session times are placeholders for now. Final times will be set once we confirm clinician schedules.

For families navigating a complex medical journey, life can often feel like a never-ending cycle of clinical appointments. Many parents carry "therapy guilt," the heavy feeling that if their child isn’t in a formal therapy session, they aren't making progress. This session is an invitation to reclaim childhood and shift the perspective from the clinic to the community.

Join us for a dynamic discussion on how "functional gains" often occur most naturally outside the hospital walls. Learn how accessible play, communication, and adaptive recreation provide the ultimate stage for social-emotional well-being. We will dive into how to ensure our children have a true voice in social settings and how the right tools and environments unlock a world of participation and belonging. Whether it’s a Saturday at an adaptive sports event or a community social club, we want to show you that these moments aren't just "breaks" from therapy; they are where skills come to life.

The main goal of epilepsy surgery is to stop or reduce seizures. However, keeping your child comfortable and able to move well is just as important to their independence. Large resective surgeries (such as frontal lobectomy, hemispherectomy, or TPO resection) can affect how a child walks, sits, and balances. Often, these physical changes don't appear until years later, when a child hits a growth spurt or starts puberty.
In this session, we will discuss:

• What to watch for: How to spot tight muscles (spasticity), stiff joints (contractures), or changes in how your child sits and walks.
• Managing growth: Why growth spurts and puberty can make movement harder and how to plan for "big" transitions, like moving across a large school campus.
• Building your care team: When to see a physiatrist, orthopedist, orthotist, or seating specialist.
• Practical tools: How bracing, Botox, and assistive devices can help home, school, and the community.
• Transitioning to Adulthood: Preparing teenagers to manage their own physical health.

You’ll leave with a clear plan to help your child stay active, comfortable, and independent as they grow into adulthood.