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Thursday, July 21
 

9:00am MDT

Research: Visual Recovery After Severe Brain Injury or Visual Pathway Disturbance
Limited Capacity filling up

NEW RESEARCH

If you are interested in participating in this research study, sign up here: RESEARCH STUDY SIGN-UP FORM
You will be contacted by the research team to schedule a time slot.

Investigator: Marlene Behrmann, PhD
Carnegie Mellon University

The research conducted in the lab of Dr. Marlene Behrmann is designed to help us understand the way the brain processes visual information in individuals who either have or will have brain surgery. In particular, researchers are interested in learning more about the visual skills that are preserved and those that are affected and whether there are particular ways in which the visual system of the brain has changed.

Participant requirements:
  • Prior epilepsy surgery (any type)
  • Age: 4 and older (including adults)
  • IQ: At least 60
  • No significant behavioral issues
  • Can perform on task for 45 minutes (with reasonable breaks if needed) and limited direction
Testing time: Approximately one hour

Participants will be seated in front of a computer screen. Researchers will first measure the integrity of the visual field and document any blind spots. Participants will then be seated in front of a computer screen and shown various shapes and pictures on the screen and the individual will either name the picture or press a button to indicate whether two pictures are the same or different. Researchers will also record the eye movements of the participant. Practice will be given to ensure that the participant understands the instructions. Accommodations and adjustments will be made where appropriate. Participants (or guardians) will sign consent forms approved by Carnegie Mellon's and the University of Pittsburgh's Institutional Review Boards.

This research is made possible by grants from the National Institutes of Health, Carnegie Mellon University, the American Epilepsy Society, and the American Psychological Foundation, .



Thursday July 21, 2022 9:00am - 4:00pm MDT
Uinta Board Room

9:00am MDT

Symptom Surveillance Working Group - by invitation only
A small working group of clinicians, researchers, and patient advocates will meet to plan our next research initiative - clinical guidelines for surveillance of symptoms of potential comorbidities (e.g. hydrocephalus, endocrinopathies, etc.) after large epilepsy surgeries.

This is not a conference session. Participation is by invitation only.  

Speakers
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →
avatar for Lynn Paul, PhD

Lynn Paul, PhD

California Institute of Technology
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →
avatar for Taylor Abel, MD

Taylor Abel, MD

Surgical Directory, Pediatric Epilepsy Surgery Program, UPMC Children's Hospital of Pittsburgh
From the University of Pittsburgh website:Taylor Abel, MD, is a pediatric neurosurgeon specializing in epilepsy surgery. He is surgical director of the Pediatric Epilepsy Surgery Program at UPMC Children’s Hospital of Pittsburgh. Dr. Abel is from Seattle, Wash. and completed his... Read More →
avatar for Marlene Behrman, PhD

Marlene Behrman, PhD

Professor of Psychology, Carnegie Mellon University
Dr. Marlene Behrmann is a Professor of Psychology at Carnegie Mellon University, whose research specializes in the cognitive basis of visual perception, with a specific focus on object recognition. Dr. Behrmann is widely considered to be a trailblazer and a worldwide leader in the... Read More →
avatar for Michael Granovetter, PhD

Michael Granovetter, PhD

Medical Student, University of Pittsburgh
Dr. Granovetter is a medical student in the Medical Scientist Training Program at University of Pittsburgh and Carnegie Mellon. His research examines how typical neural processes may become disrupted in pediatric neurological disorders and the consequent effects that this may have... Read More →
avatar for Aria Fallah, MD, MSc

Aria Fallah, MD, MSc

Head of Pediatric Neurosurgery, UCLA Mattel Children's Hospital
Dr. Aria Fallah’s expertise and research interests are in Evidence Based Surgery, Clinical Trials, Observational Studies and Meta-Analyses as it relates to clinical and operative Pediatric Epilepsy Surgery. His current research projects include large international studies to generate... Read More →


Thursday July 21, 2022 9:00am - 4:00pm MDT
Executive Boardroom (4th floor)

11:00am MDT

Family pool and playground access - admission fee
You and your family will have access to the Silver Mountain Sports Club & Spa family pool and playground. Includes a 65' water slide and lazy river!

ADMISSION FEE:
  • $15 per adult
  • $10 per child
  • Children 6 and under free

Thursday July 21, 2022 11:00am - 9:00pm MDT
Silver Mountain Sports Club & Spa

3:00pm MDT

Check-In and Info Booth
Check in, grab your swag bag, and learn about all the fun things to do while you're in Park City!

Thursday July 21, 2022 3:00pm - 7:00pm MDT
Timbers Restaurant Patio

4:00pm MDT

Free shuttle to downtown Park City
Grab the hotel's free shuttle and go into beautiful Park City! Enjoy a meal with old friends, shop until you drop, or see a movie.
INFORMATION

Thursday July 21, 2022 4:00pm - 10:00pm MDT

7:00pm MDT

S'mores and outdoor games
Kick off the conference by enjoying complimentary s'mores by the fire pits! Grab a refreshment at the Timbers Bar and Patio onsite while you play yard games with friends you've met on social media. Enjoy!

Thursday July 21, 2022 7:00pm - 9:00pm MDT
Outdoor Plaza
 
Friday, July 22
 

7:00am MDT

Check-In and Info Booth
Check in, grab your swag bag, and learn about all the fun things to do while you're in Park City!

Friday July 22, 2022 7:00am - 5:00pm MDT
Hotel lobby

7:30am MDT

Breakfast Buffet



Friday July 22, 2022 7:30am - 9:00am MDT
Outdoor Plaza

8:00am MDT

Kid Camp - Babies
Our kid camp is professionally staffed by Corporate Kids. Your child will enjoy a day entertainment, arts, crafts and other fun activities. Includes a quiet room for children who prefer a low key environment.

Requires pre-registration and $25 fee.



Friday July 22, 2022 8:00am - 5:00pm MDT
Wasatch

8:00am MDT

Kid Camp - Children and Youth
Our kid camp is professionally staffed by Corporate Kids. Your child will enjoy a day entertainment, arts, crafts and other fun activities. Includes a quiet room for children who prefer a low key environment.

Requires pre-registration and $25 fee. 

Friday July 22, 2022 8:00am - 5:00pm MDT
Prospector 1 - 2

8:00am MDT

Kid Camp - Toddlers
Our kid camp is professionally staffed by Corporate Kids. Your child will enjoy a day entertainment, arts, crafts and other fun activities. Includes a quiet room for children who prefer a low key environment.

Requires pre-registration and $25 fee. 

Friday July 22, 2022 8:00am - 5:00pm MDT
Outlook

9:00am MDT

Opening Session: The Global Pediatric Epilepsy Surgery Registry
Limited Capacity seats available

The Global Pediatric Epilepsy Surgery is the first patient-powered registry to track the developmental trajectory after pediatric epilepsy surgery in childhood. Dr. Aria Fallah, registry advisory board member, and Monika Jones, principal investigator, will provide the first complete community report from the registry.

Learn about what the registry has revealed about:
  • seizure control
  • reoperation rates
  • side effects
  • educational attainment
  • social skills
  • mental health
  • and other areas of concern for parents and caregivers.



Speakers
avatar for Erin Williamson

Erin Williamson

HR Director, Worldwide Oilfield Machine
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →
avatar for Aria Fallah, MD, MSc

Aria Fallah, MD, MSc

Head of Pediatric Neurosurgery, UCLA Mattel Children's Hospital
Dr. Aria Fallah’s expertise and research interests are in Evidence Based Surgery, Clinical Trials, Observational Studies and Meta-Analyses as it relates to clinical and operative Pediatric Epilepsy Surgery. His current research projects include large international studies to generate... Read More →


Friday July 22, 2022 9:00am - 9:45am MDT
Prospector 4

9:00am MDT

Opening Session: The Global Pediatric Epilepsy Surgery Registry (Overflow)
Limited Capacity seats available

The Global Pediatric Epilepsy Surgery is the first patient-powered registry to track the developmental trajectory after pediatric epilepsy surgery in childhood. Dr. Aria Fallah, registry advisory board member, and Monika Jones, principal investigator, will provide the first complete community report from the registry.

Learn about what the registry has revealed about:
  • seizure control
  • reoperation rates
  • side effects
  • educational attainment
  • social skills
  • mental health
  • and other areas of concern for parents and caregivers.



Moderators
avatar for Erin Williamson

Erin Williamson

HR Director, Worldwide Oilfield Machine

Speakers
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →
avatar for Aria Fallah, MD, MSc

Aria Fallah, MD, MSc

Head of Pediatric Neurosurgery, UCLA Mattel Children's Hospital
Dr. Aria Fallah’s expertise and research interests are in Evidence Based Surgery, Clinical Trials, Observational Studies and Meta-Analyses as it relates to clinical and operative Pediatric Epilepsy Surgery. His current research projects include large international studies to generate... Read More →


Friday July 22, 2022 9:00am - 9:45am MDT
Silvermine A and B

9:00am MDT

Expo and Resource Fair
Don't forget to visit our expo! If you visit each exhibitor, you'll be entered in raffle to win a free iPad.

Friday July 22, 2022 9:00am - 4:00pm MDT
Prospector 3

9:00am MDT

Research: Visual Recovery After Severe Brain Injury or Visual Pathway Disturbance
Investigator: Marlene Behrmann, PhD
Carnegie Mellon University

The research conducted in the lab of Dr. Marlene Behrmann is designed to help us understand the way the brain processes visual information in individuals who either have or will have brain surgery. In particular, researchers are interested in learning more about the visual skills that are preserved and those that are affected and whether there are particular ways in which the visual system of the brain has changed.

Participant requirements:
  • Prior epilepsy surgery (any type)
  • Age: 4 and older (including adults)
  • IQ: At least 60
  • No significant behavioral issues
  • Can perform on task for 45 minutes (with reasonable breaks if needed) and limited direction
Testing time: Approximately one hour

Participants will be seated in front of a computer screen. Researchers will first measure the integrity of the visual field and document any blind spots. Participants will then be seated in front of a computer screen and shown various shapes and pictures on the screen and the individual will either name the picture or press a button to indicate whether two pictures are the same or different. Researchers will also record the eye movements of the participant. Practice will be given to ensure that the participant understands the instructions. Accommodations and adjustments will be made where appropriate. Participants (or guardians) will sign consent forms approved by Carnegie Mellon's and the University of Pittsburgh's Institutional Review Boards.

This research is made possible by grants from the National Institutes of Health, Carnegie Mellon University, the American Epilepsy Society, and the American Psychological Foundation, .

Friday July 22, 2022 9:00am - 4:00pm MDT
Park City Community Foundation and Uinta boardroom

10:15am MDT

Understanding Your State's Disability Resources
Limited Capacity seats available

This session will help attendees identify the systems available to support children with disabilities in their state.

Mr. Goldin is presenting this session remotely. Questions will be taken from the audience in the conference room by the moderator. You may also watch the video stream on the Sched app from your smartphone.

Moderators
avatar for Nicole Murray

Nicole Murray

Vice President, Development, Epilepsy Foundation
Nicole Murray serves as the Sponsorship Chair for the Organizing Committee and is responsible for securing sponsors to support the conference. Nicole is Partnership and Development Lead for The Brain Recovery Project where she develops and manages relationships with corporate and... Read More →

Speakers
avatar for Tal Goldin, Esq.

Tal Goldin, Esq.

Supervising Atty., Core Services & Discrimination, Disability Rights Montana
Tal M. Goldin is a Helena, Montana based civil rights attorney. He is the supervising attorney for the Core Services and Discrimination Unit at Disability Rights Montana (DRM), the State’s Protection and Advocacy organization. Tal is the former Director of Advocacy at Montana Legal... Read More →


Friday July 22, 2022 10:15am - 11:15am MDT
Silver Mine B

10:15am MDT

Academic Skills After Hemispheric Surgeries - Reading, Math, and Attention
In 2019, researchers from the Brain, Education, and Mind Lab at MGH Institutes tested children at our family conference to understand reading, math, and attention/executive function after surgery.  This session will provide the first report of what this research revealed about educational skills after hemispheric surgery.

Moderators
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →

Speakers
avatar for Amy Maguire

Amy Maguire

Speech and Language Pathologist/Cognitive Therapist, MGH Institute of Health Professionals
Amy Maguire is a medical speech language pathologist and cognitive therapist with inpatient, outpatient, and private practice experience at the Massachusetts General Hospital in Boston, MA. Dedicated to advancing patient-centered care for patients undergoing neurosurgical intervention... Read More →


Friday July 22, 2022 10:15am - 11:15am MDT
Prospector 4

10:15am MDT

When To Consider RNS, DBS, or VNS
Limited Capacity seats available

When is it time to think about neuromodulation to treat your child's or your epilepsy? Are these devices successful when seizures return after resection or disconnection? We'll do a deep dive to discuss what's new in the world of neuromodulation devices (vagus nerve stimulation, deep brain stimulation, and responsive neurostimulation.)







Moderators
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →

Speakers
avatar for Taylor Abel, MD

Taylor Abel, MD

Surgical Directory, Pediatric Epilepsy Surgery Program, UPMC Children's Hospital of Pittsburgh
From the University of Pittsburgh website:Taylor Abel, MD, is a pediatric neurosurgeon specializing in epilepsy surgery. He is surgical director of the Pediatric Epilepsy Surgery Program at UPMC Children’s Hospital of Pittsburgh. Dr. Abel is from Seattle, Wash. and completed his... Read More →


Friday July 22, 2022 10:15am - 11:15am MDT
Silver Mine A

11:00am MDT

Family pool and playground access - free admission
You and your family will have free access to the Silver Mountain Sports Club & Spa family pool and playground. Includes a 65' water slide and lazy river!

Mention "The Brain Recovery Project" to get free access.

Please take a moment to thank our sponsors for their financial support. Their partnership provides us with the opportunity to offer a day at the Silver Mountain Sports Club at no cost to you.

Friday July 22, 2022 11:00am - 9:00pm MDT
Silver Mountain Sports Club & Spa

11:30am MDT

Gadgets 101: Assistive technologies for daily living
Limited Capacity seats available

Gadgets are assistive technologies that can help you participate in activities of daily living, education, employment, and leisure time. This session will help you understand all the things you can use to help to help you throughout the day. 

Other resources:

Moderators
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →

Speakers
avatar for Dan Crowley

Dan Crowley

AT Coordinator, Utah Assistive Technology Program
Dan O'Crowley, a certified Assistive Technology Professional (ATP), started working at the Institute for Disability Research, Policy, and Practice (IDRPP) in September of 2016 with the Utah Assistive Technology Program (UATP). Dan operates as an AT Coordinator for northern Utah and... Read More →
avatar for Bora Lee, EdD

Bora Lee, EdD

Program Director, Utah Assistive Technology Program
Bora Lee is the director of the Utah Assistive Technology Program within the Institute for Disability Research, Policy & Practice at Utah State University.She came to UATP as an Americorps VISTA member in 2019. That same year, Bora earned her Ed.D in educational leadership from California... Read More →


Friday July 22, 2022 11:30am - 12:30pm MDT
Prospector 4

11:30am MDT

The latest in anti-seizure medication
Limited Capacity seats available

Some children are not seizure-free after epilepsy surgery. This session will help you understand new developments in anti-seizure medication.


Moderators
Speakers
avatar for Matthew Sweney

Matthew Sweney

Medical Director, Comprehensive Pediatric Epilepsy Program, Primary Children's Hospital
Dr. Sweney is a pediatric neurologist and epileptologist who focuses on the diagnosis and treatment of drug-resistant pediatric epilepsy. He is Medical Director of the Comprehensive Pediatric Epilepsy Program at Primary Children’s Hospital. He is board certified in General Pediatrics... Read More →
avatar for Scott Perry

Scott Perry

Director of Neurology, Cook Children Hospital
Dr. Perry joined the Neurosciences Program at Cook’s Children in 2009 as a pediatric epileptologist, then served as the Medical Director of the Epilepsy Monitoring Unit and Tuberous Sclerosis Complex clinic before assuming the role of Medical Director of Neurology in 2016. His clinical and research interests focus on the treatment of childhood on... Read More →


Friday July 22, 2022 11:30am - 12:30pm MDT
Silver Mine A

11:30am MDT

Gait lab analysis for children with hemiparesis
Limited Capacity filling up

Moderators
avatar for Nicole Murray

Nicole Murray

Vice President, Development, Epilepsy Foundation
Nicole Murray serves as the Sponsorship Chair for the Organizing Committee and is responsible for securing sponsors to support the conference. Nicole is Partnership and Development Lead for The Brain Recovery Project where she develops and manages relationships with corporate and... Read More →

Speakers
avatar for Bruce MacWilliams

Bruce MacWilliams

Shriner's Hospital for Children, Motion Analysis Center
Dr. MacWilliams' research interests center around applications for pediatric gait analysis. These include developing new tools, models and techniques for movement analysis, the study of clincial gait pathologies, and clinical outcomes studies.
avatar for Amy Shukra, DPT

Amy Shukra, DPT

Physical Therapist, Shriner's Hospital for Children, Motion Analysis Center


Friday July 22, 2022 11:30am - 12:30pm MDT
Silver Mine B

12:30pm MDT

Lunch
Friday July 22, 2022 12:30pm - 1:45pm MDT
Outdoor Plaza

2:00pm MDT

Creating the future you want with financial strategies
Limited Capacity seats available

The financial aspects of caring for a child or adult with special needs can be daunting. This session will include will provide you with an overview of what you need to do, including:
  • How to Address Primary Issues
  • Creating a Life Care Plan Vision
  • Guardianships/Alternatives to Guardianships
  • Identifying Financial Resources
  • Preparing Life Care Plan Costs
  • Legal Instruments
  • Preparing a Letter of Intent
  • Special Needs Trusts and ABLE Accounts
  • Family Meetings
  • How to Review Your Life Care Plan Annually

Moderators
avatar for Nicole Murray

Nicole Murray

Vice President, Development, Epilepsy Foundation
Nicole Murray serves as the Sponsorship Chair for the Organizing Committee and is responsible for securing sponsors to support the conference. Nicole is Partnership and Development Lead for The Brain Recovery Project where she develops and manages relationships with corporate and... Read More →

Speakers
avatar for Mary McDirmid, ChSNC

Mary McDirmid, ChSNC

Special Needs Financial Planner, Special Abilities Network
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 Special Abilities Network and a volunteer advocate for kids with rare diseases. She take the title... Read More →


Friday July 22, 2022 2:00pm - 3:00pm MDT
Silver Mine A

2:00pm MDT

Navigating adulthood: Building lasting friendships, interview skills, and advocacy tips
Limited Capacity seats available

Growing up and leaving high school can be a challenging time for a teen or young adult with neurological differences. This session will introduce you tip on how to express your desires in social and professional settings, explore education and career opportunities, and determine which jobs are right for you.

Moderators
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →

Speakers
JJ

Jade Jorgenson

Statewide Parent Consultant, Utah Parent Center
avatar for Jennie Dopp

Jennie Dopp

Transition University Project Coordinator, Utah Parent Centerr
Jennie Dopp is the Transition University Coordinator for the Utah Parent Center (UPC). Jennie is from Layton, Utah, and holds degrees from Weber State University and Southern Utah University. Jennie is a philanthropist at heart and enjoys trying to make a difference in the lives of... Read More →


Friday July 22, 2022 2:00pm - 3:00pm MDT
Silver Mine B

2:00pm MDT

Orthotics Overview
Limited Capacity seats available

Children with hemiparesis or other mobility challenges often use orthotic device. This session will provide you with an overview of pediatric orthotic devices.

Moderators
Speakers
avatar for Dave Patterson

Dave Patterson

Clinician, Goal Pediatric Orthotics
David has always had a strong passion for working with children. Previous to his career as an Orthotist, he worked as an athletic coach and directed youth programs with a Utah non-profit. While studying pre-medicine at the University of Utah, David volunteered at Shriners Hospital... Read More →


Friday July 22, 2022 2:00pm - 3:00pm MDT
Executive Boardroom (4th floor)

2:00pm MDT

The future is here: technologies to improve function
Limited Capacity seats available

What devices are available to improve function for children with hemiparesis? We'll introduce you to several new technologies that can help your child (or you if you're an adult who had surgery in childhood) improve arm and hand function, walking, and posture.

Moderators
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →

Speakers
avatar for Janae Halter CO/LO

Janae Halter CO/LO

Clinical Specialist, Myomo
avatar for Parag Gad

Parag Gad

Co-Founder and CEO, SpineX
SpineX Inc. is an early stage bioelectric medtech company developing Noninvasive Neuromodulation devices. We are committed to helping individuals with unmet clinical needs. Our goal is to use rigorously tested neuromodulation technologies to aid recovery and restoration of bladder... Read More →
avatar for Jonathan Sakai

Jonathan Sakai

Director of Commercialization, Cionic
At Cionic, we're building bionic clothing that can analyze and augment human movement, enabling the body to move with more freedom and control. In addition to being lightweight and durable, our system is driven by powerful algorithms that adapt in real time to each individual's mobility... Read More →


Friday July 22, 2022 2:00pm - 3:00pm MDT
Prospector 4

3:00pm MDT

Refreshment Break
Visit our exhibitor and enjoy refreshments and cookies.

Friday July 22, 2022 3:00pm - 3:30pm MDT
Prospector 3

3:30pm MDT

Managing chronic headaches after surgery
Limited Capacity seats available

Children and adults who have had epilepsy surgery often complain of chronic headaches. This is especially true after craniotomy. This session will explore various treatments and technologist for headache management. 

Speakers
avatar for Angie Wathan

Angie Wathan

Montana Empowerment Center
avatar for Anna Esparham

Anna Esparham

Director, Headache Treatment Center, Children's Mercy
Anna Esparham, MD is a triple board-certified physician in integrative medicine, pediatrics, and medical acupuncture. She also has received additional certifications in clinical hypnosis and aromatherapy to apply as many pediatric integrative medicine approaches to help children and... Read More →


Friday July 22, 2022 3:30pm - 4:30pm MDT
Silver Mine B

3:30pm MDT

Sibling Support: What We've Learned, What You Need To know
For the past several months, we have met with siblings in our community to understand their needs. This effort, led by volunteers Erica Hauser and Catherine Flynn, will help us design our sibling support program.

This session will share common themes we've learned from our sibling meetings, outline what parents should consider, and frame program ideas. It will also include what research says about siblings of children with chronic health needs, intellectual disabilities, and other differences. Tips and strategies will be shared.

Moderators
avatar for Nicole Murray

Nicole Murray

Vice President, Development, Epilepsy Foundation
Nicole Murray serves as the Sponsorship Chair for the Organizing Committee and is responsible for securing sponsors to support the conference. Nicole is Partnership and Development Lead for The Brain Recovery Project where she develops and manages relationships with corporate and... Read More →

Speakers
avatar for Lindsey Devries, PhD

Lindsey Devries, PhD

Psychologist, Children's Hospital Colorado
Lindsey N. DeVries, PhD is a licensed psychologist and Assistant Professor in the Department of Pediatrics, Division of Developmental Pediatrics at the University of Colorado School of Medicine. She received her B.S. in Psychology at the University and M.S. at Eastern Kentucky University... Read More →
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →


Friday July 22, 2022 3:30pm - 4:30pm MDT
Prospector 4

3:30pm MDT

Neuroplasticity of the visual system
Limited Capacity full
Adding this to your schedule will put you on the waitlist.

Moderators
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →

Speakers
avatar for Michael Granovetter, PhD

Michael Granovetter, PhD

Medical Student, University of Pittsburgh
Dr. Granovetter is a medical student in the Medical Scientist Training Program at University of Pittsburgh and Carnegie Mellon. His research examines how typical neural processes may become disrupted in pediatric neurological disorders and the consequent effects that this may have... Read More →
avatar for Marlene Behrman, PhD

Marlene Behrman, PhD

Professor of Psychology, Carnegie Mellon University
Dr. Marlene Behrmann is a Professor of Psychology at Carnegie Mellon University, whose research specializes in the cognitive basis of visual perception, with a specific focus on object recognition. Dr. Behrmann is widely considered to be a trailblazer and a worldwide leader in the... Read More →


Friday July 22, 2022 3:30pm - 4:30pm MDT
Silver Mine A

4:00pm MDT

Teen/Young Adult Meet and Greet
Are you a teen or young adult who had epilepsy surgery in childhood? Meet your crew and get to know new friends.

*This session is only for teens (age 12 and over)/young adults who had epilepsy surgery in childhood. Parents may attend if necessary.

Refreshments will be served.



Moderators
Friday July 22, 2022 4:00pm - 5:00pm MDT
Indoor Pool area

4:00pm MDT

Free shuttle to downtown Park City
Grab the hotel's free shuttle and go into beautiful Park City! Enjoy a meal with old friends, shop until you drop, or see a movie.
INFORMATION

Friday July 22, 2022 4:00pm - 10:00pm MDT

4:30pm MDT

Sibling Meet and Greet
Are you a sibling who's ready to have fun? This session is a great opportunity to meet other kids just like you, play games to help break the ice, and talk about your feelings around having a brother or sister who's different than most kids.

Snacks and refreshments will be served.

Moderators
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →

Friday July 22, 2022 4:30pm - 5:15pm MDT
Outdoor Plaza
 
Saturday, July 23
 

7:30am MDT

Breakfast
Limited Capacity seats available




Saturday July 23, 2022 7:30am - 9:00am MDT
Outdoor Plaza

9:00am MDT

National Ability Center
Our families will enjoy activities at the National Ability Center. The facility is approximately 8 minutes from the hotel. We will be shuttling families to and from the site in coach buses and a small shuttle bus. Families can also choose to use their own transportation if preferred.  

GETTING TO THE NAC:

For families who chose wall climbing, cycling, archery, or giant swing as your activity:

a) Group 1 will leave the hotel at 8:45 a.m. and arrive at the NAC at 9:00 a.m. Your activities will begin at 9:30 a.m. You are free to participate in yard games or self-guided hiking after you finish your activity or while you wait for your turn.

b) Group 2 will leave the hotel at 10:15 a.m. and arrive at the NAC at 10:30 a.m. Your activities will begin at 11:00 a.m. You are free to participate in yard games or self-guided hiking after you finish your activity or while you wait for your turn. (You may go to the NAC on an earlier bus if there is enough room.)

For families who chose self-guided hiking or yard games as your activity: Buses will be cycling to transport you to the NAC starting at 9:30 a.m. through 11:00 a.m.

RETURNING TO THE HOTEL:

Buses and shuttle will return families to the hotel throughout the late morning until approximately 12:30 p.m.  

Saturday July 23, 2022 9:00am - 12:30pm MDT
National Ability Center

9:00am MDT

Research: Visual Recovery After Severe Brain Injury or Visual Pathway Disturbance
Investigator: Marlene Behrmann, PhD
Carnegie Mellon University

The research conducted in the lab of Dr. Marlene Behrmann is designed to help us understand the way the brain processes visual information in individuals who either have or will have brain surgery. In particular, researchers are interested in learning more about the visual skills that are preserved and those that are affected and whether there are particular ways in which the visual system of the brain has changed.

Participant requirements:
  • Prior epilepsy surgery (any type)
  • Age: 4 and older (including adults)
  • IQ: At least 60
  • No significant behavioral issues
  • Can perform on task for 45 minutes (with reasonable breaks if needed) and limited direction
Testing time: Approximately one hour

Participants will be seated in front of a computer screen. Researchers will first measure the integrity of the visual field and document any blind spots. Participants will then be seated in front of a computer screen and shown various shapes and pictures on the screen and the individual will either name the picture or press a button to indicate whether two pictures are the same or different. Researchers will also record the eye movements of the participant. Practice will be given to ensure that the participant understands the instructions. Accommodations and adjustments will be made where appropriate. Participants (or guardians) will sign consent forms approved by Carnegie Mellon's and the University of Pittsburgh's Institutional Review Boards.

This research is made possible by grants from the National Institutes of Health, Carnegie Mellon University, the American Epilepsy Society, and the American Psychological Foundation, .

Saturday July 23, 2022 9:00am - 4:00pm MDT
Outlook and Wasatch

11:00am MDT

Family pool and playground access - admission fee
You and your family will have access to the Silver Mountain Sports Club & Spa family pool and playground. Includes a 65' water slide and lazy river!

ADMISSION:
  • $15 per adult
  • $10 per child
  • Children 6 and under free

Saturday July 23, 2022 11:00am - 9:00pm MDT
Silver Mountain Sports Club & Spa

12:30pm MDT

Lunch
Limited Capacity seats available

Saturday July 23, 2022 12:30pm - 1:45pm MDT
Outdoor Plaza

2:00pm MDT

Public school, private school, or home school - what works?
Limited Capacity seats available

Should a child after epilepsy surgery be educated in a public school, private school, or homeschooled? What are the pros and cons of each placement? This roundtable session will bring several different viewpoints from parents in our community. 

Moderator: Audrey Vernick

Disclaimer: The views and opinions expressed in this session are those of the speakers and do not necessarily reflect the views or positions of any entities they represent or of The Brain Recovery Project.

Moderators
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →

Speakers
avatar for Nicole Abreu Shepard

Nicole Abreu Shepard

Volunteer Manager, Curriculum and Literacy, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation
A teacher trained at the University of Chicago’s Urban Teacher Education Program, Nicole dedicated her career to serving low-income, urban and immigrant communities in the public school system; first in Seattle in a high poverty, refugee and immigrant community, then in San Francisco... Read More →
avatar for Douglas Pietersma, Ed.D.

Douglas Pietersma, Ed.D.

Founder, Alta Meta Enterprises
Dr. Pietersma is a researcher in the field of home education, a home-educating father, the director of a church-based home education support ministry, and a curriculum writer of home education foreign language courses. His professional work includes being the editor of The Home School... Read More →
avatar for Angie Wathan

Angie Wathan

Montana Empowerment Center


Saturday July 23, 2022 2:00pm - 3:00pm MDT
Prospector 4

2:00pm MDT

If resection doesn't work: When to consider mTOR inhibitors
Limited Capacity seats available

Some children have unsuccessful resective epilepsy surgeries. This session will cover when to consider mTOR inhibitors for children with hemimegalencephaly, tuberous sclerosis, or cortical dysplasia.

Dr. Hauptman is presenting this session remotely. Questions from the audience will be taken live from the conference room. You can also watch this session in the Sched app.

Moderators
avatar for Luke Shepard

Luke Shepard

Board Chair, Brain Recovery Project
My daughter Alexis is 11 years old, and she had a left hemispherotomy for hemimegalencephaly at age 5. She enjoys school, loves music & dance, and is excited about Kids Camp today at the conference.The Brain Recovery Project has been an enormous help in guiding us through the decision... Read More →

Speakers
avatar for Jason Hauptman, MD, PhD

Jason Hauptman, MD, PhD

Neurosurgeon, Seattle Children's Hospital
Jason S. Hauptman, MD, PhD, is a board-certified pediatric neurosurgeon and is an associate professor of neurological surgery.  He is a staff neurosurgeon at both Seattle Childrens Hospital and Harborview Medical Center.  He dedicates a significant portion of his clinical practrice... Read More →


Saturday July 23, 2022 2:00pm - 3:00pm MDT
Silver Mine A

2:00pm MDT

Minimally invasive surgeries
Limited Capacity seats available

Minimally invasive epilepsy surgeries do not require a craniotomy. They are typically done through holes in the skull with instruments like lasers and endoscopic tools. This session will cover the various minimally invasive surgeries offered to children with drug-resistant seizures, including disconnections and after failed initial surgeries.

Moderators
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →

Speakers
avatar for Sandi Lam

Sandi Lam

Division Head, Pediatric Neurosurgery, Ann & Robert H. Lurie Children's Hospital
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 →
avatar for David Adelson

David Adelson

Chief, Pediatric Neurosurgery, Phoenix Children's Hospital
P. David Adelson, MD, FAAP, FACS, FAANS is the Chief of Pediatric Neurosurgery at Phoenix Children's and the Diane and Bruce Halle Endowed Chair for Pediatric Neurosciences. Receiving his undergraduate and medical degrees from Columbia University, he completed his neurosurgical residency... Read More →


Saturday July 23, 2022 2:00pm - 3:00pm MDT
Silver Mine B

3:15pm MDT

Applied Behavior Analysis: Can It Help My Child?
Limited Capacity seats available

This session will introduce you to applied behavior analysis and how it may help your child in recovery. Topics covered will include:
  • What role does behavior analysis play in your child’s recovery?
  • How ABA treats common problems
  • Example of ABA in daily life (toileting, bedtime/sleep routines
  • How ABA helps with teaching (physical therapy and learning examples)

Moderators
avatar for Erin Williamson

Erin Williamson

HR Director, Worldwide Oilfield Machine

Speakers
HP

Holli Perrin, MS, BCBA

Owner and Director, Goshen City Behavioral Health


Saturday July 23, 2022 3:15pm - 4:15pm MDT
Silver Mine A

3:15pm MDT

Individual Education Plans After Epilepsy Surgery: An Introduction
Limited Capacity seats available

Our Global Pediatric Epilepsy Surgery Registry reveals that 90% of children receive special education after surgery. This session will provide you with an overview of the IEP process.

Moderators
avatar for Nicole Murray

Nicole Murray

Vice President, Development, Epilepsy Foundation
Nicole Murray serves as the Sponsorship Chair for the Organizing Committee and is responsible for securing sponsors to support the conference. Nicole is Partnership and Development Lead for The Brain Recovery Project where she develops and manages relationships with corporate and... Read More →

Speakers
avatar for Monika Jones, Esq.

Monika Jones, Esq.

Executive Director, The Brain Recovery Project
Monika Jones is founder and Executive Director of The Brain Recovery Project. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile... Read More →


Saturday July 23, 2022 3:15pm - 5:00pm MDT
Silver Mine B

3:15pm MDT

Transitioning to Adulthood - An Introduction
Limited Capacity filling up

Transitioning to adulthood can be a challenging, especially for children on individual education plans in school. This session will provide an overview of transition IEPs, health communication, and financial planning.

For a deep dive on transition, take our free, self-paced course: Education Transition for Children with Neurological Conditions.

Speakers
avatar for Audrey Vernick

Audrey Vernick

Director, Patient and Family Advocacy, The Brain Recovery Project:
Audrey Vernick serves as the Director of Patient and Family Advocacy for The Brain Recovery Project: Childhood Epilepsy Surgery Foundation. Her role is helping patients after epilepsy surgery access medical, educational, vocational, transition, and community living resources across the lifespan. She supports patients and their families in navigating systems, connecting with services, and understanding all areas of disabili... Read More →


Saturday July 23, 2022 3:15pm - 5:00pm MDT
Prospector 4

5:30pm MDT

Closing Banquet and Dance Party - A Night Under the Stars!
Limited Capacity seats available

Dance 'til you drop at our signature closing event! Enjoy a plentiful buffet, rock out to your favorite music, and take photos in our photo booth! It's our final night together - let's have fun!





Saturday July 23, 2022 5:30pm - 8:30pm MDT
Outdoor Plaza
 
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