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Friday, July 17
 

7:00am CDT

Registration + Info Desk
Friday July 17, 2026 7:00am - 5:00pm CDT
Welcome!

When you arrive at the designated location, please proceed to the check-in area where you will be able to collect your event materials, including your badge which serves as your official identification for the duration of the event. It is essential that you have your badge on your person at all times to ensure smooth access to all areas and activities.
Friday July 17, 2026 7:00am - 5:00pm CDT
Registration F

7:30am CDT

Breakfast
Seasonal sliced fruit, field melons, fresh berries, wholebananas, individual plain, fruit, greek yogurt, breakfast cereals, home-style granola, fat free milk, 2% milk, almond milk, steel cut oats, chopped pecans, dried fruits, brown sugar, maple syrup, breakfast pastries, petite muffins, fruit preserves, honey.


Subject to change without notice. 
Friday July 17, 2026 7:30am - 8:45am CDT
Kalahari Ballroom 3001 Kalahari Blvd, Round Rock, TX 78665, USA

8:00am CDT

Kid Camp Registration
Friday July 17, 2026 8:00am - 9:00am CDT
Corporate Kids is our professional kid camp provider. During the registration process, your child will receive an ID bracelet,secure sign-in and sign-out procedures will be explained to you, and a digital photo of your child will be captured.

Kid camp does not open until 8:30 a.m.

Separate, pre-purchased tickets are required for your child to attend kid camp. Space is limited.
Friday July 17, 2026 8:00am - 9:00am CDT
Registration D 3001 Kalahari Blvd, Round Rock, TX, USA

8:30am CDT

Kid Camp
Friday July 17, 2026 8:30am - 5:00pm CDT
Our kid camp includes a wide range of fun arts and crafts, games, and age-appropriate activities for all children at our conference.

Room choices include:

  • Quiet Room - best for babies, toddlers, and those with significant sensory challenges
  • Activity Room - Lots to do for our more active campers!
Please note:

  • All children attending the conference must be registered with their own ticket, whether or not they are participating in Kid Camp.
  • Kid camp requires a separate ticket - $25.00 per child. 

Friday July 17, 2026 8:30am - 5:00pm CDT
Nile 3001 Kalahari Blvd, Round Rock, TX, USA

9:00am CDT

Welcome and Opening Session - Community Report from the Global Pediatric Epilepsy Surgery Registry + Neuromodulation Research Meeting Update
Our founder and Executive Director will open our conference with a welcome message and some logistics for you to remember while you're here. Then, she'll discuss what happens after the surgery is over? For many families, the hospital discharge is just the beginning of a new chapter filled with questions about development, therapy, and long-term quality of life. In this session, we turn to our patient-powered data source to find answers: the Global Pediatric Epilepsy Surgery Registry. We'll review the latest Community Report and highlight the outcomes that matter most to families. We will share aggregated, de-identified data contributed by hundreds of caregivers like you, covering:
  • Developmental Trajectories: Real-world insights into motor, cognitive, and speech progress post-surgery.
  • The "Invisible" Challenges: Shared experiences regarding endocrine health, vision, and behavioral health that often go unremarked in the clinic.
  • Navigating Care: How registry data is identifying gaps in post-surgical rehabilitation and school support.

Speakers
avatar for Monika Jones

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance

Friday July 17, 2026 9:00am - 9:45am CDT
Kalahari Ballroom 3001 Kalahari Blvd, Round Rock, TX 78665, USA

9:00am CDT

Teen + Young Adult Kickoff: Meet Up and Life Hacks.
Friday July 17, 2026 9:00am - 9:45am CDT
Want to connect with peers who know exactly what it's like to navigate life after epilepsy surgery? This session is a relaxed, group-led space designed for teens and young adults to meet others who truly get it and share real-life advice on building independence.

What we'll cover:
  • The Social Circle: Practical, confident ways to talk about your surgery history with new friends, roommates, or dates.
  • School & Work Accommodations: A clear guide to navigating legal protections (like 504 plans and the ADA) so you can confidently ask for things like rest breaks or extra test time.
  • Tech & Independence Tech: A fast-paced share of the best apps, gear, and daily habits for solo health tracking, alongside a guide to updating your Seizure Action Plan.
The Goal: Disarm the anxiety, walk away with practical tools you can use right away, and connect with a "Weekend Buddy" so you have a familiar face for the rest of the conference!

NOTE: This is a special session for self-advocates (teens and adults who had surgery in childhood).
Moderators
avatar for Roxanne Cogil, BS, CBIS

Roxanne Cogil, BS, CBIS

Executive Director of Regional Teams, Central Region, Epilepsy Foundation
Roxanne Cogil is the Epilepsy Foundation’s Executive Director of Regional Teams in the Central Region based out of Iowa. She has worked with the Epilepsy Foundation for over 14 years, has a Bachelor of Science Degree from Iowa State University and is a Certified Brain Injury Specialist... Read More →
avatar for Kelli Tran

Kelli Tran

Human Development and Family Sciences/Social Work Student, Texas State University
I am currently a senior at Texas State University studying Human Development and Family Sciences with a minor in Social Work. My goal is to become a Certified Child Life Specialist because of my passion for supporting children and families through challenging medical experiences with... Read More →
Speakers
avatar for Cindy Fitchpatrick, CCLS

Cindy Fitchpatrick, CCLS

Assistant Professor of Instruction, Texas State University
Cindy Fitchpatrick has been a Certified Bilingual Child Life Specialist (CCLS) for 29 years. Currently, works at Wonders and Worries, as a PRN CCLS and a RWWP Consultant, working with children and adolescents of adult patients. She has also been Adjunct Faculty at UT Austin, teaching... Read More →
Friday July 17, 2026 9:00am - 9:45am CDT
Salon A 3001 Kalahari Blvd, Round Rock, TX, USA

9:00am CDT

Participate in Research - Homonymous Hemianopia/Spot Driving Hazards
Friday July 17, 2026 9:00am - 5:00pm CDT
See full description and how to sign up here
Speakers
avatar for Alex Bowers, PhD

Alex Bowers, PhD

Associate Professor of Ophthalmology, Bowers Lab, Harvard University
Dr. Bowers is a clinician scientist whose primary focus is vision rehabilitation research. She has made significant contributions to the field as an optometrist in the United Kingdom, as well as an educator and researcher. Dr. Bowers is a highly accomplished clinical scientist focused... Read More →
avatar for Jing Xu, PhD

Jing Xu, PhD

Faculty Researcher, Bowers Lab, Harvard University
Dr. Jing Xu is a faculty researcher dedicated to enhancing the safety and independence of the visually impaired community. Her tenure in the lab has seen her grow from postdoctoral fellow to faculty, building from her experiences as a Bosma Research Associate at the Envision Research... Read More →
Friday July 17, 2026 9:00am - 5:00pm CDT
Salon I

9:00am CDT

Participate in Research - Understanding the Family Perspective on Epilepsy Surgery
Friday July 17, 2026 9:00am - 5:00pm CDT
Researchers are conducting a first-of-its-kind study to understand the "real world" experience of families navigating the epilepsy surgery journey. While most research happens in doctors' offices, this study focuses on your voice within the patient advocacy community. Your insights will help us identify barriers to care and what matters most to families when making surgical decisions.

Speakers
avatar for Ruba Al-Ramadhani, MD

Ruba Al-Ramadhani, MD

Associate Director, Pediatric Epilepsy Surgery Program, UPMC Children's Hospital of Pittsburgh
Dr. Al-Ramadhani is a board-certified Pediatric Neurologist and Epileptologist, currently serving as the Program Director of the Child Neurology Residency Program and Associate Medical Director of the Pediatric Epilepsy Surgery Program at UPMC Children’s Hospital of Pittsburgh... Read More →
Friday July 17, 2026 9:00am - 5:00pm CDT
Expo Hall

9:00am CDT

Participate in Research - Visual Processing
Friday July 17, 2026 9:00am - 5:00pm CDT
A full description of this research is here
Speakers
avatar for Maria Z. Chroneos

Maria Z. Chroneos

Graduate Student, Carnegie Mellon University and University of Pittsburgh
Maria Chroneos is interested in how brain networks organize across development to support cognitive and functional behavior. She is particularly interested in reorganization and plasticity in individuals with neurological disorders, injuries, and other disruptions to these processes... Read More →
avatar for Marlene Behrmann, PhD

Marlene Behrmann, PhD

Professor, Ophthalmology, University of Pittsburgh

Dr. Behrmann is an Emeritus Professor in the Department of Psychology/Neuroscience Institute at Carnegie Mellon University. Widely considered to be a worldwide leader in the field of visual cognition, she was inducted into the National Academy of Sciences in 2015 and into the Ame... Read More →
Friday July 17, 2026 9:00am - 5:00pm CDT
Salon F

9:00am CDT

Participate in Research - Visual Processing
Friday July 17, 2026 9:00am - 5:00pm CDT
A full description of this research is here
Speakers
avatar for Maria Z. Chroneos

Maria Z. Chroneos

Graduate Student, Carnegie Mellon University and University of Pittsburgh
Maria Chroneos is interested in how brain networks organize across development to support cognitive and functional behavior. She is particularly interested in reorganization and plasticity in individuals with neurological disorders, injuries, and other disruptions to these processes... Read More →
avatar for Marlene Behrmann, PhD

Marlene Behrmann, PhD

Professor, Ophthalmology, University of Pittsburgh

Dr. Behrmann is an Emeritus Professor in the Department of Psychology/Neuroscience Institute at Carnegie Mellon University. Widely considered to be a worldwide leader in the field of visual cognition, she was inducted into the National Academy of Sciences in 2015 and into the Ame... Read More →
Friday July 17, 2026 9:00am - 5:00pm CDT
Salon G

9:00am CDT

Participate in Research - Global Pediatric Epilepsy Surgery Registry
Friday July 17, 2026 9:00am - Saturday July 18, 2026 5:00pm CDT
Doctors know the medical side of surgery, but you are the expert on your child’s daily life. This registry is a way for parents to share how their children are doing months or years after surgery. By answering a few questions, you help researchers understand how surgery affects things like learning, moving, and long-term health.

Instead of trying to fill out forms on your phone in a noisy hallway, we’ve created a calm space for you to contribute to this important research.

  • Total Privacy: We have a dedicated room where you can complete the registry questions away from the crowds.
  • Everything is Ready: We provide the iPad and a comfortable place to sit so you can work at your own pace.

Who can use the room?


Any parent or guardian whose child (age 0 - 18) who has had epilepsy surgery (or is currently being evaluated for it) is welcome to stop by.


Ready to complete the registry now?


You can participate in the registry from the comfort of your own home. All you need is internet access and a compiter, tablet, or smart phone. 

🔗 GET STARTED


Sign-up form coming soon


Speakers
avatar for Monika Jones

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance

Friday July 17, 2026 9:00am - Saturday July 18, 2026 5:00pm CDT
Expo Hall

10:00am CDT

The Care Map: Mastering Medical Advocacy at Every Stage of the Epilepsy Journey
Friday July 17, 2026 10:00am - 10:45am CDT
When a child faces epilepsy surgery, the medical world becomes a permanent part of a family’s life. But how do you manage a complex medical team as your child grows and their needs change over time?
In this session, Katie Taylor, CCLS, provides a masterclass in medical advocacy for every stage of the journey. This isn’t just about surviving a hospital stay; it’s about understanding the "Multidisciplinary Team" as a lifelong resource. Whether you are preparing for an upcoming procedure, navigating the transition to outpatient care, or managing years of long-term follow-up, you will learn how to coordinate the experts, track the "big picture" of your child's care, and protect their emotional well-being.


Moderators
AA

Amy Alaniz

Parent Support Navigator, Pediatric Epilepsy Surgery Alliance

Speakers
avatar for Katie Taylor, CCLS

Katie Taylor, CCLS

Director of Psychosocial Care, AngelEye Health, CEO and Founder, Child Life On Call
Katie Taylor has been a certified child life specialist for over 15 years and has supported thousands of families through their most challenging healthcare moments. She created Inside the Children's Hospital (formerly Child Life On Call) in 2018 to amplify the voices of families navigating... Read More →
Friday July 17, 2026 10:00am - 10:45am CDT
Salon C 3001 Kalahari Blvd, Round Rock, TX, USA

10:00am CDT

Living Your Best Life: Skills for Adulthood After Epilepsy Surgery As A Child
Friday July 17, 2026 10:00am - 10:45am CDT

For individuals who underwent surgeries like hemispherectomy in childhood, adulthood brings a new set of milestones that go far beyond medical management. The focus often shifts to "executive functions". These are the essential mental skills that allow us to organize our day, manage our emotions, and interact effectively with the world around us.
We will discuss the practical, daily realities of navigating life, work, and social relationships.
Topics of discussion will include:
  • Harnessing Self-Awareness: Understanding why many adults develop exceptional self-monitoring skills and how this heightened awareness helps compensate for physical or sensory challenges.
  • The "Initiation" Hurdle: Discussing why starting tasks can sometimes be more difficult than finishing them, and sharing strategies to bridge the gap between "knowing what to do" and "doing it."
  • Perspectives on Progress: Exploring how you and your support systems (family and partners) sometimes see daily challenges differently, and how to improve communication and mutual understanding.
  • Adaptability and Resilience: Celebrating the brain’s incredible ability to reorganize and thrive, proving that surgery does not define your potential for a successful, independent adult life.



Moderators
avatar for Nicole Murray

Nicole Murray

Director of Development, Pediatric Epilepsy Surgery Alliance
Nicole Murray serves as the Director of Development for the Pediatric Epilepsy Surgery Alliance (formerly The Brain Recovery Project), returning to the organization where she previously served as Development Director. In her current role, she leads strategic fundraising initiatives... Read More →
Speakers
avatar for Lynn Paul, PhD

Lynn Paul, PhD

Senior Research Scientist, California Institute of Technology
Lynn Paul's research is broadly focused on understanding the role that cortical connectivity plays in development of higher-order social cognition and the brain's capacity for reorganization during development. Utilizing eye-tracking, standardized neuropsychological instruments, and... Read More →
Friday July 17, 2026 10:00am - 10:45am CDT
Salon A 3001 Kalahari Blvd, Round Rock, TX, USA

10:00am CDT

Developmental and Epileptic Encephalopathies: Medication, Surgery, and Developmental Outcomes
Friday July 17, 2026 10:00am - 10:45am CDT
This session will explore the complex care of children with developmental and epileptic encephalopathies (such as Lennox Gastaut syndrome, infantile spasms, Otahara syndrome, and DEE-SWAS) with a focus on how treatment decisions may affect both seizure control and long-term development. Speakers will discuss the role of medication, the circumstances in which epilepsy surgery may be considered, and what families should know about balancing risks, benefits, and developmental goals. Attendees will gain a clearer understanding of how clinicians think about these severe epilepsy syndromes and the factors that can influence outcomes over time.
Moderators
avatar for Monika Jones

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance

Speakers
avatar for Sonal Bhatia, MD

Sonal Bhatia, MD

Pediatric epileptologist, Children's Health, Dallas
Sonal Bhatia, MBBS, MD, FACNS, FAES is a pediatric neurologist and epileptologist at Children’s Health℠. She is also an Associate Professor of Pediatrics and Neurology at UT Southwestern. She has a special interest in caring for children who have epilepsy, infantile spasms and... Read More →
avatar for Charuta Joshi, MD

Charuta Joshi, MD

Professor, Pediatric Neurology, UT Southwestern Medical Center
Charuta Joshi, M.D., is a Professor in the Departments of Pediatrics and Neurology and the Roy D. and Ragen S. Elterman Distinguished Chair in Pediatric Epilepsy at UT Southwestern Medical Center. She specializes in developmental and epileptic encephalopathies and surgical and nonsurgical... Read More →
avatar for Ruba Al-Ramadhani, MD

Ruba Al-Ramadhani, MD

Associate Director, Pediatric Epilepsy Surgery Program, UPMC Children's Hospital of Pittsburgh
Dr. Al-Ramadhani is a board-certified Pediatric Neurologist and Epileptologist, currently serving as the Program Director of the Child Neurology Residency Program and Associate Medical Director of the Pediatric Epilepsy Surgery Program at UPMC Children’s Hospital of Pittsburgh... Read More →
DEE pptx
Friday July 17, 2026 10:00am - 10:45am CDT
Salon B 3001 Kalahari Blvd, Round Rock, TX, USA

10:00am CDT

Health, Hope, and the Future: Transition Planning for Students with Complex Medical Needs
Friday July 17, 2026 10:00am - 10:45am CDT
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.
Moderators
avatar for Audrey Vernick

Audrey Vernick

Director of Patient and Family Advocacy, Pediatric Epilepsy Surgery Alliance
Audrey Vernick is the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Her journey into advocacy began with her son, Bennett, who suffered an in utero stroke leading to unrelenting infantile spasms. After failing multiple anti-seizure medications... Read More →
Speakers
avatar for Roni Jo Frazier, M.Ed., CAS, QIDP

Roni Jo Frazier, M.Ed., CAS, QIDP

Chief Executive Officer, Bloom Consulting
Roni Jo Frazier is a dedicated leader in the field of education and disability services, driven by a personal mission to help every individual reach their full potential. Her work is centered on the belief that with the right support and innovative programming, the transition from... Read More →
avatar for Jamie Moyer

Jamie Moyer

Chief Program and Development Officer., Bloom Consulting
Jamie Moyer is a dedicated advocate who believes every student deserves a clear path to a meaningful and independent future. As the National Director of Pre-Employment Transition Services (Pre-ETS) at Bloom Consulting, Jamie focuses her expertise on ensuring young people with disabilities... Read More →
Friday July 17, 2026 10:00am - 10:45am CDT
Salon D 3001 Kalahari Blvd, Round Rock, TX, USA

10:00am CDT

Expo and Resource Fair
Friday July 17, 2026 10:00am - 5:00pm CDT
Our Expo and Resource Fair will be open all day, giving families plenty of time to stop in between sessions, ask questions, and gather practical tools. You’ll meet epilepsy centers, therapy and education professionals, community organizations, researchers, and companies working on treatments and supports for children with drug-resistant epilepsy.

Come to explore at your own pace. Pick up handouts, learn about services and programs, and get connected to resources you can use right away. Whether you’re early in the surgery decision process or navigating life after surgery, the Expo is designed to help you leave with options, answers, and next steps.

Full list of expo resources coming soon! 
Friday July 17, 2026 10:00am - 5:00pm CDT
Expo Hall

10:00am CDT

Participate In Research - Family Perspectives About Epilepsy Surgery
Friday July 17, 2026 10:00am - 5:00pm CDT
Pediatric Epilepsy Surgery Study: Share Your Family’s Journey

Researchers are seeking to understand the "real-world" experiences of families navigating pediatric epilepsy surgery. By gathering perspectives from the patient advocacy community, this study aims to identify barriers to care and uncover what matters most to families when making surgical decisions.

How to Participate: Stop by the UPMC Children's Hospital of Pittsburgh table at the expo to learn more. The questionnaire can be completed online at your convenience, from anywhere.
Speakers
avatar for Ruba Al-Ramadhani, MD

Ruba Al-Ramadhani, MD

Associate Director, Pediatric Epilepsy Surgery Program, UPMC Children's Hospital of Pittsburgh
Dr. Al-Ramadhani is a board-certified Pediatric Neurologist and Epileptologist, currently serving as the Program Director of the Child Neurology Residency Program and Associate Medical Director of the Pediatric Epilepsy Surgery Program at UPMC Children’s Hospital of Pittsburgh... Read More →
Friday July 17, 2026 10:00am - 5:00pm CDT
Expo Hall

11:00am CDT

Balance and Eye Movement Challenges After Brain Injury or Surgery
Friday July 17, 2026 11:00am - 11:45am CDT
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.
Moderators
avatar for Nicole Murray

Nicole Murray

Director of Development, Pediatric Epilepsy Surgery Alliance
Nicole Murray serves as the Director of Development for the Pediatric Epilepsy Surgery Alliance (formerly The Brain Recovery Project), returning to the organization where she previously served as Development Director. In her current role, she leads strategic fundraising initiatives... Read More →
Speakers
avatar for Denise Gobert, PhD

Denise Gobert, PhD

Certified Vestibular Rehabilitation Specialist, UT CARE Initiative
Dr. Gobert has been practicing physical therapy for over 20 years and teaches in the Neuro/ Research track in the Doctoral Physical Therapy Program at the Texas State University in San Marcos, Texas. Her clinical practice and research specializes in the care of persons with neurological... Read More →
Friday July 17, 2026 11:00am - 11:45am CDT
Salon D 3001 Kalahari Blvd, Round Rock, TX, USA

11:00am CDT

Mapping the Mind: Neuropsychological Evaluation and Tracking Progress After Epilepsy Surgery to Inform School Interventions
Friday July 17, 2026 11:00am - 11:45am CDT
When a child undergoes epilepsy surgery, families are often told they need neuropsychological testing, but many aren't sure what it actually measures or how to use the results to support their child's education. This session pulls back the curtain on neuropsychological evaluations to help you find clarity, track cognitive changes, and advocate effectively in the classroom.

Dr. Rosalia Costello and Dr. Karen Evankovich will walk you through the clinical evaluation journey:
  • Before Surgery: Learn how initial assessments help the medical team "map" your child’s cognitive strengths and risks to inform the final surgical decision.
  • After Surgery: Discover how cognitive skills like reading, focus, memory, and processing speed evolve as your child grows, and why repeat testing is crucial to tracking long-term progress.
  • School Advocacy: Get practical guidance on how to translate complex neuropsychological data into actionable IEP goals, 504 plans, and vital school accommodations.
You will leave knowing exactly what questions to ask your clinical team, how to interpret test scores, and how to confidently advocate for your child's academic and long-term cognitive growth.

Moderators
avatar for Audrey Vernick

Audrey Vernick

Director of Patient and Family Advocacy, Pediatric Epilepsy Surgery Alliance
Audrey Vernick is the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Her journey into advocacy began with her son, Bennett, who suffered an in utero stroke leading to unrelenting infantile spasms. After failing multiple anti-seizure medications... Read More →
Speakers
avatar for Karen Evankovich, PhD

Karen Evankovich, PhD

Pediatric Neuropsychologist, Dell Children's Medical Center
Karen Evankovich, PhD, is a pediatric neuropsychologist in UT Health Austin Pediatric Neurosciences at Dell Children’s, a clinical partnership between Dell Children’s Medical Center and UT Health Austin. Additionally, Dr. Evankovich is an associate professor in the Dell Medical... Read More →
avatar for Rosalia Costello, PsyD

Rosalia Costello, PsyD

Pediatric Neuropsychologist, Dell Children's Medical Center
Rosalia Costello, PsyD, is a pediatric psychologist with UT Health Austin who practices at Dell Children's in Austin, Texas. Dr. Costello specializes in diagnosing and treating behavioral and mental health disorders in children and adolescents, including substance abuse, self-harm... Read More →
Friday July 17, 2026 11:00am - 11:45am CDT
Salon C 3001 Kalahari Blvd, Round Rock, TX, USA

11:00am CDT

Protection and Advocacy for Beneficiaries of Social Security
Friday July 17, 2026 11:00am - 11:45am CDT
If you receive Social Security benefits (SSI or SSDI), you have a legal right to the services you need to work or attend school. This session provides an overview of the Protection and Advocacy for Beneficiaries of Social Security (PABSS) program, a free legal resource that protects the rights of people with disabilities. (While our speaker is from Disability Rights Texas, this program is available in every state.)

In this session, you will learn how to:
  • Advocate for services: If agencies like Vocational Rehabilitation (VR) or Employment Networks (EN) are not providing the help you need or are "dragging their feet," PABSS can step in to advocate for those services.
  • Prevent overpayments: Understand exactly how employment affects your SSI or SSDI checks. You will learn the rules so you can avoid being shocked by a large bill or "overpayment" from Social Security.
  • Protect your rights at work: Know your employment rights and "reasonable accommodations" under the Americans with Disabilities Act (ADA).
  • Remove barriers to education: Get help if you are facing barriers to college or vocational training to ensure you have the access you need for your future.
Whether you are a student, a parent, or an adult currently in the workforce, this session will show you how to protect your benefits and your legal rights.
Moderators
avatar for Roxanne Cogil, BS, CBIS

Roxanne Cogil, BS, CBIS

Executive Director of Regional Teams, Central Region, Epilepsy Foundation
Roxanne Cogil is the Epilepsy Foundation’s Executive Director of Regional Teams in the Central Region based out of Iowa. She has worked with the Epilepsy Foundation for over 14 years, has a Bachelor of Science Degree from Iowa State University and is a Certified Brain Injury Specialist... Read More →
Speakers
avatar for Randi Turner

Randi Turner

Advocate, Disability Rights Texas
Randi Turner has spent her career acting as a bridge between complex state policies and the real-world needs of the people they serve. As the Accessibility and Disability Rights Coordinator for the Texas Governor’s Committee on People with Disabilities, Randi’s work is rooted... Read More →
Friday July 17, 2026 11:00am - 11:45am CDT
Salon A 3001 Kalahari Blvd, Round Rock, TX, USA

11:00am CDT

Why Genetic Testing Matters for All Children with Epilepsy
Friday July 17, 2026 11:00am - 11:45am CDT
Genetic testing can help explain the cause of a child’s epilepsy, guide treatment decisions, identify related health concerns, and connect families to research opportunities. This session will break down the different types of genetic testing, when testing may be appropriate, and what families should know about possible results, including uncertain findings. It will also cover practical issues like access, and how to use results to ask better questions and make more informed decisions.
Moderators
avatar for Monika Jones

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance

Speakers
avatar for M. Scott Perry, MD

M. Scott Perry, MD

Head of Neurosciences, Jane and john Justin Neurosciences Center, Cook Children's Medical Center
M. Scott Perry is the Head of Neurosciences and Director of the Genetic Epilepsy Clinic at the Jane and John Justin Institute for Mind Health at Cook Children’s Medical Center, Fort Worth, TX.

He completed his medical degree at the University of Mississippi School of Medicine... Read More →
avatar for Dennis Lal, PhD

Dennis Lal, PhD

Founding Director, Center of Neurogenetics, UTHealth Houston, Texas
Dennis Lal, PhD is an internationally recognized genomic scientist, biomedical informatics leader, and precision health architect whose work focuses on transforming how genomic and clinical data are translated into real-world impact for children with rare and complex diseases. He... Read More →
Friday July 17, 2026 11:00am - 11:45am CDT
Salon B 3001 Kalahari Blvd, Round Rock, TX, USA

12:00pm CDT

Lunch
Friday July 17, 2026 12:00pm - 1:00pm CDT
Ice box salad: chopped lettuce, cucumber, cherry tomatoes, red onions,peas, shredded cheese, croutons with herb yogurt dressing

Creamy kale-slaw: shredded cabbage, baby kale, carrot, creamy cider dressing

Build Your Own Grill Sandwich: BBQ rubbed chicken breast, beef burger, chipotle black bean burger, brioche bun

Toppings: leaf lettuce, sliced tomato, sliced white onion, pickled red onion, pickle chips, sliced jalapeno, crispy bacon, cheddar, pepper jack & provolone

Sauces: mayonnaise, ketchup, yellow mustard, smoky BBQ, buttermilk ranch

Served with crispy potato wedges, grilled squash medely, house kettle chips, seasonal fruit cobbler, freshly baked chocolate chip cookies

Subject to change without notice. 
Friday July 17, 2026 12:00pm - 1:00pm CDT
Kalahari Ballroom 3001 Kalahari Blvd, Round Rock, TX 78665, USA

1:00pm CDT

Expo Bingo
Friday July 17, 2026 1:00pm - 1:45pm CDT
Take a break and explore the Expo Hall with Expo Bingo. Pick up a bingo card and stroll through the booths, meet exhibitors, and learn about helpful resources. As you visit tables, you’ll collect stamps to complete your card.
Turn in your completed card by the end of the time slot to be entered into a prize drawing. Winners will be selected at random, so not everyone will win, but everyone will leave with new connections and resources.
Friday July 17, 2026 1:00pm - 1:45pm CDT
Expo Hall

2:00pm CDT

Hearing and Listening After Epilepsy Surgery
Friday July 17, 2026 2:00pm - 2:45pm CDT
Some children and young adults have hearing-related challenges after epilepsy surgery even when their basic hearing is normal. This session will explore how epilepsy surgery can affect auditory processing, including understanding speech, following directions, processing sound in noisy settings, and keeping up in school or daily life. Families will learn what signs to watch for, how these issues are evaluated, and what supports may help at home, in therapy, and in the classroom.

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

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance

Speakers
avatar for Emily Harford, SLP

Emily Harford, SLP

Clinical Research Coordinator, Speech Language Pathologist, UPMC Children's Hospital of Pittsburgh
Emily Harford is a dedicated researcher whose work focuses on the adaptability of the developing brain. Her heart is in understanding how children navigate life and thrive after major neurological procedures, such as hemispherotomy. By studying how the brain processes sound, recognizes... Read More →
Friday July 17, 2026 2:00pm - 2:45pm CDT
Salon B 3001 Kalahari Blvd, Round Rock, TX, USA

2:00pm CDT

Research Update: Driving With Homonymous Hemianopia
Friday July 17, 2026 2:00pm - 2:45pm CDT
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.
Moderators
avatar for Audrey Vernick

Audrey Vernick

Director of Patient and Family Advocacy, Pediatric Epilepsy Surgery Alliance
Audrey Vernick is the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Her journey into advocacy began with her son, Bennett, who suffered an in utero stroke leading to unrelenting infantile spasms. After failing multiple anti-seizure medications... Read More →
Speakers
avatar for Jing Xu, PhD

Jing Xu, PhD

Faculty Researcher, Bowers Lab, Harvard University
Dr. Jing Xu is a faculty researcher dedicated to enhancing the safety and independence of the visually impaired community. Her tenure in the lab has seen her grow from postdoctoral fellow to faculty, building from her experiences as a Bosma Research Associate at the Envision Research... Read More →
avatar for Alex Bowers, PhD

Alex Bowers, PhD

Associate Professor of Ophthalmology, Bowers Lab, Harvard University
Dr. Bowers is a clinician scientist whose primary focus is vision rehabilitation research. She has made significant contributions to the field as an optometrist in the United Kingdom, as well as an educator and researcher. Dr. Bowers is a highly accomplished clinical scientist focused... Read More →
Friday July 17, 2026 2:00pm - 2:45pm CDT
Salon D 3001 Kalahari Blvd, Round Rock, TX, USA

2:00pm CDT

Social Success and the Regulated Brain
Friday July 17, 2026 2:00pm - 2:45pm CDT
    Surgery is often seen as the finish line, but for many children and teens, it’s actually the starting block for a new kind of marathon. This session bridges the gap between clinical recovery and real-world thriving, focusing on the unique ways the brain adapts socially and emotionally after epilepsy surgery. We will explore the science of "social rewiring" to understand how the brain reorganizes cues and communication post-surgery, while providing practical tools like the "Regulation Ladder" to guide children, teens, and young adults from a meltdown state back to a state of learning.

Moderators
avatar for Nicole Murray

Nicole Murray

Director of Development, Pediatric Epilepsy Surgery Alliance
Nicole Murray serves as the Director of Development for the Pediatric Epilepsy Surgery Alliance (formerly The Brain Recovery Project), returning to the organization where she previously served as Development Director. In her current role, she leads strategic fundraising initiatives... Read More →
Speakers
avatar for Karen Keough, MD

Karen Keough, MD

Medical Director & Epilepsy Program Director, Child Neurology & Consultants of Austin
Dr. Karen Keough earned her medical degree from Johns Hopkins University School of Medicine and completed a fellowship in child neurology at Duke University and an additional fellowship in epilepsy at Baylor University in Houston.

Dr. Keough is a Clinical Assistant Professor of Pe... Read More →
Friday July 17, 2026 2:00pm - 2:45pm CDT
Salon A 3001 Kalahari Blvd, Round Rock, TX, USA

2:00pm CDT

Sib Shops (for tween sibs only)
Friday July 17, 2026 2:00pm - 3:45pm CDT
For siblings ages 8-12 only. 20 children max. Sorry, no exceptions. 

Celebrate the unique, complex, and vital role of being a sibling to a child with a disability. This 2-hour Sibshops session is a dynamic workshop that recognizes the “real” sibling experience - the good, the tough, and everything in between. We believe siblings are each other’s best resource, so we’ve designed a nurturing, fun, kids-only environment where siblings can connect, reflect on their experiences, and support one another. Through a mix of games and peer-led discussions, participants find community and fun in equal measure. 

We gratefully acknowledge the Vernick family, whose generous donation made this workshop possible.
Speakers
avatar for Alyssa Geis, MPH, CCLS

Alyssa Geis, MPH, CCLS

Child Life Clinical Specialist, Texas Children's Hospital
Alyssa Geis, MPH, CCLS, has extensive experience in child life services, beginning with a role as Outpatient Surgery Certified Child Life Specialist at The Children's Hospital at OU Medical Center from September 2010 to June 2018. In this position, Alyssa provided developmentally... Read More →
Friday July 17, 2026 2:00pm - 3:45pm CDT
Salon C 3001 Kalahari Blvd, Round Rock, TX, USA

3:00pm CDT

Supporting Siblings through the Epilepsy Surgery Journey
Friday July 17, 2026 3:00pm - 3:45pm CDT
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.



Speakers
avatar for Audrey Vernick

Audrey Vernick

Director of Patient and Family Advocacy, Pediatric Epilepsy Surgery Alliance
Audrey Vernick is the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Her journey into advocacy began with her son, Bennett, who suffered an in utero stroke leading to unrelenting infantile spasms. After failing multiple anti-seizure medications... Read More →
Friday July 17, 2026 3:00pm - 3:45pm CDT
Salon D 3001 Kalahari Blvd, Round Rock, TX, USA

3:00pm CDT

Advances In Epilepsy Surgery
Friday July 17, 2026 3:00pm - 3:45pm CDT
This session will bring together experts to discuss recent advances in epilepsy surgery, including new techniques, technologies like focused ultrasound, and approaches to patient selection, planning, and follow-up care. Attendees will hear about emerging trends in the field, what may be changing in clinical practice, and what these developments could mean for children and families considering surgery now or in the future.
Moderators
avatar for Monika Jones

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance

Speakers
avatar for Taylor Abel

Taylor Abel

Chief, Neurosurgery, UPMC Children's Hospital of Pittsburgh
Taylor Abel, MD, is chief of pediatric neurosurgery and surgical director of the Pediatric Epilepsy Surgery Program at UPMC Children's Hospital of Pittsburgh. He is an American Board of Neurological Surgery and American Board Pediatric Neurological Surgery certified pediatric neurosurgeon... Read More →
avatar for Sandi Lam, MD, MBA

Sandi Lam, MD, MBA

Division Chief, Neurosurgery, Ann and Robert H. Lurie Children's Hospital of Chicago
Dr. Lam is a pediatric neurosurgeon and a leading specialist in the areas of pediatric cerebrovascular surgery, epilepsy surgery and craniofacial surgery with a focus on minimally invasive and endoscopic techniques. In addition to her clinical experience in complex surgeries, her... Read More →
Friday July 17, 2026 3:00pm - 3:45pm CDT
Salon B 3001 Kalahari Blvd, Round Rock, TX, USA

3:00pm CDT

Brave on the Page™: Telling Your Story After Epilepsy Surgery
Friday July 17, 2026 3:00pm - 4:45pm CDT
You have a story that belongs only to you. This is your space to explore it, find your voice, and discover what’s waiting inside you. Brave on the Page™ is a 90-minute writing workshop for teens and adults (13+) who have had epilepsy surgery in childhood. Hosted by bestselling children’s author Marianne Richmond, with a master’s in clinical mental health counseling, this is a supportive space to get your real, uncensored thoughts onto paper. No “perfect” writing or experience required, just come as you are.



What to expect:
  • Real Talk: Marianne shares her journey from living with epilepsy to becoming a bestselling author.
  • Creative Spark: We’ll use "entry points" like photographs, text from Marianne's books, song lyrics, and other creative prompts to spark your ideas.
  • Quiet Space: Plenty of time to write and process your thoughts at your own pace.
  • Supportive Vibes: A relaxed environment led by a professional who truly "gets it."
  • Your Choice: Share your writing if you want to, or keep it just for you. Even if you're nervous to share, the gift of being witnessed in your story is such a gift
As Marianne says, “I created Brave on the Page because writing helped me make sense of myself and my place in the world. Come see what’s waiting for you—trust me, you’ll be awed by yourself!”



Details
  • Who: Teens and adults (13+) who had epilepsy surgery in childhood. 20 participants max.
  • Bring: Whatever you use to communicate! Notebooks, laptops, iPads, or AAC devices are all welcome.
  • Support: If you need a scribe or a support person to help you get your ideas down, please bring them along or let us know in advance.

NOTE: This is a special session for self-advocates (teens and adults who had surgery in childhood).
Speakers
avatar for Marianne Richmond, MA

Marianne Richmond, MA

Bestselling Children’s Author, Speaker & Brave on the Page™ Expressive Writing Facilitator, Marianne Richmond Studios
Longtime children's author, artist, and mental health professional Marianne Richmond has touched the lives of millions over the past three decades through her beloved picture books. In 1997, while recovering from brain surgery for epilepsy, she wrote and illustrated her first book... Read More →
Friday July 17, 2026 3:00pm - 4:45pm CDT
Salon A 3001 Kalahari Blvd, Round Rock, TX, USA

4:00pm CDT

Texas-Sized Hearts: A Bling & Breathe Session for Moms
Friday July 17, 2026 4:00pm - 4:45pm CDT
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.
Moderators
avatar for Nicole Murray

Nicole Murray

Director of Development, Pediatric Epilepsy Surgery Alliance
Nicole Murray serves as the Director of Development for the Pediatric Epilepsy Surgery Alliance (formerly The Brain Recovery Project), returning to the organization where she previously served as Development Director. In her current role, she leads strategic fundraising initiatives... Read More →
Speakers
avatar for Tiffany Townsend

Tiffany Townsend

Mother, Advocate, Author, Devoted Mama
Tiffany Townsend is a mom, advocate, and author of Challenging the Spectrum, a memoir about her family’s experience with autism, epilepsy, and SUDEP. She is passionate about supporting other moms through practical encouragement, creative activities, and community-building. Tiffany’s work focuses on giving mothers space to breathe, connect, and feel genuinely... Read More →
Friday July 17, 2026 4:00pm - 4:45pm CDT
Salon D 3001 Kalahari Blvd, Round Rock, TX, USA

4:00pm CDT

Red Flags After Epilepsy Surgery: Seizures Returning, Behavior Shifts, and Hidden Neurologic Issues
Friday July 17, 2026 4:00pm - 4:45pm CDT

When a child has had epilepsy surgery, new symptoms can be scary and can be misunderstood, especially in the emergency room. This neurosurgery-led session helps families recognize red flags that could point to a surgical or neurologic problem, and teaches you how to advocate clearly and effectively with ER staff and neurosurgical teams.
Surgeons will cover what they worry about when seizures return, behaviors suddenly change, or new “spells” appear, including signs of incomplete disconnection or other post-surgical complications, and both common and less obvious signs of hydrocephalus or shunt malfunction. We’ll talk about symptoms that can look like “behavior” but may actually be seizures or rising pressure in the brain, and what details help neurosurgeons act fast.

Families will leave with a practical ER advocacy toolkit: what to track at home, the key phrases that get the right attention, what imaging or consults are typically considered, what to ask for when you suspect a neurosurgical issue, and how to escalate respectfully if you’re not being heard. This session is designed to help you feel more prepared in high-stress moments.
Moderators
avatar for Monika Jones

Monika Jones

Founder + Executive Director, Pediatric Epilepsy Surgery Alliance

Speakers
avatar for Aria Fallah, MD, MS, MBA

Aria Fallah, MD, MS, MBA

Director, Epilepsy Surgery, UCLA Health
Dr. Aria Fallah is a renowned epilepsy surgeon recognized as one of the leading neurosurgeons in the United States and Southern California. He is distinguished for his rare dual expertise in both pediatric and adult epilepsy surgery, a field in which he maintains one of the busiest... Read More →
avatar for Jason Hauptman, MD, PhD

Jason Hauptman, MD, PhD

Division Chief, Neurosurgery, Phoenix Children's Hospital
Dr. Hauptman has highly specialized training in pediatric neurosurgery, epilepsy/functional neurosurgery and pediatric surgical neuro-oncology.

He treats a wide range of conditions including brain tumors, epilepsy and spina bifida, as well as inherited brain and spine disorders. Dr. Hauptman is a nationally and internationally recognized expert in the use of robotic stereo-electroencephalography (sEEG), neuromodulation includin... Read More →
Friday July 17, 2026 4:00pm - 4:45pm CDT
Salon B 3001 Kalahari Blvd, Round Rock, TX, USA

4:00pm CDT

A Lifetime of Support: Building Your Child’s Financial Safety Net
Friday July 17, 2026 4:00pm - 4:45pm CDT
Most parents are the "engine" that keeps their child’s world running, but what happens when you are no longer there to steer the ship? Vital government benefits like SSI and Medicaid provide a foundation for healthcare and housing, allowing your child to live a full, independent life. Without a formal plan, a simple inheritance or savings account can accidentally disqualify them from this vital safety net. This session cuts through the jargon to show you how tools like ABLE accounts and special trusts work with the system to protect your child’s money and medical benefits, ensuring the care and support they need are always there, no matter what.
Moderators
avatar for Audrey Vernick

Audrey Vernick

Director of Patient and Family Advocacy, Pediatric Epilepsy Surgery Alliance
Audrey Vernick is the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Her journey into advocacy began with her son, Bennett, who suffered an in utero stroke leading to unrelenting infantile spasms. After failing multiple anti-seizure medications... Read More →
Speakers
avatar for Mary McDirmid, ChSNC

Mary McDirmid, ChSNC

Co-Founder, Special Needs Financial Planner, All Needs Planning
When Mary isn’t helping families navigate the world of special needs financial planning, she is being a wife to Jay and a mom to Charlie and Ruth. In addition to her leadership role at All Needs Planning and a volunteer advocate for kids with rare diseases. She takes the title “Mom... Read More →
Friday July 17, 2026 4:00pm - 4:45pm CDT
Salon C 3001 Kalahari Blvd, Round Rock, TX, USA

5:00pm CDT

Enjoy the resort!
Friday July 17, 2026 5:00pm - 11:30pm CDT
Enjoy the many things to do at the resort!

🏝️ Outdoor Water Park (open until 7 pm)
💦 Indoor Water Park (open until 9 pm)
🍔 Restaurants
🛍️ Shopping
👾 Tom Foolery Arcade and Adventure Park 🎢 (closes at midnight)
📋 Full list of things to do at the Kalahari Resort

Please note: Indoor and outdoor water park access is included only with a Kalahari room reservation, not with conference tickets. Arcade games and rides are an additional cost and are also not included with conference tickets.


Friday July 17, 2026 5:00pm - 11:30pm CDT

7:00pm CDT

Teen and Young Adult Bowling Mixer
Teen + Young Adult Bowling Night (on us!)

Teens and young adults ages 13+ who had epilepsy surgery in childhood are invited to bowl together on us. It’s a fun, low-pressure chance to meet others who truly get it and hang out outside the sessions.

Hosted by:

Toby and Kara Erickson Harris
Brad and Monika Jones
Jon and Nicole Murray 

Interested in hosting this event? Contact Nicole Murray at [email protected].


Friday July 17, 2026 7:00pm - 9:00pm CDT
B-Lux Bowling @ Tom Foolery Arcade (Kalahari)
 
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