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PEDIATRIC EPILEPSY SURGERY CONFERENCE
AND FAMILY REUNION
JULY 5 - 8, 2017
HILTON ORLANDO • ORLANDO, FLORIDA

Surround yourself with people who get it, learn from experts, and form lifelong bonds. This year’s event will be held at the spectacular Hilton Orlando resort, with two temperature-controlled pools, lazy river, whirlpool, a winding water slide, tennis, volleyball, and basketball courts, an inexpensive trolley ride away from International Drive‘s shopping, attractions, and dining experiences, including SeaWorld and Universal Orlando Resort, and a 7-mile shuttle ride away from DisneyWorldEpcot, and other area attractions! For more information, including registration, see the General Information tab below.

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Wednesday, July 5
 

4:00pm

Check In
Check in, grab your badge, and pick up an agenda. 

Wednesday July 5, 2017 4:00pm - 6:00pm
Florida Registration Office

5:00pm

Pizza Party!
Don't miss this first event! Enjoy a delicious buffet of pizza and salads, including cash bar. This is the perfect time to greet old friends and make new ones. Teens and young adults will be seated together in a special "meet and greet" section.

Wednesday July 5, 2017 5:00pm - 7:00pm
Florida Ballroom 4
 
Thursday, July 6
 

9:00am

Opening Session and Keynote Address: Celebrating Our Differences
Conference host The Brain Recovery Project: Childhood Epilepsy Surgery Foundation will share what the organization does and provide further detail on the various sessions. See old friends and meet new ones in this grand opening session! 

 

Moderators
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →

Speakers
avatar for Peter Binkley

Peter Binkley

Designer, Open-Sourced Prosthetics, e-Nabling the Future
Peter Binkley is one of the e-NABLE community‘s most active designers. Together with his son, Peregrine Hawthorne, they designed the Talon hand, the Ody hand, and the Flextensor. He also collaborated with other e-NABLE on the design of the Raptor hand. | | At the behest of The Brain Recovery Project and through a grant given to the organization by Global Genes, Peter is now working on homemade device using 3D printed technology and other... Read More →


Thursday July 6, 2017 9:00am - 9:45am
Florida Ballroom 4

10:00am

Brain 101
What is a corticospinal tract? What are the various functions of different parts of the brain? What are the connections that everyone talks about? What do all these medical terms mean? This introductory session will give you a quick rundown of the various concepts and terms you'll need to know in many subsequent sessions of this conference. A great primer for new families. Includes a quick recap of some prior conference sessions. Presented by parents, for parents, in a non-intimidating environment.

Speakers
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →


Thursday July 6, 2017 10:00am - 11:00am
Florida Ballroom 4

10:00am

Therasuit Therapy for Core Strength, Balance, and Ambulation

Therasuit Method Intensive Program (sometimes called TMIP) is an intensive individualized therapy program that accelerates functional progress. The program uses the Therasuit® (a soft canvas suit with bungee-like cords attached) and the Universal Exercise Unit (“Spider Cage”) to allow the child to learn new & correct patterns of movement through strengthening and functional skills practice. The Therasuit Program is ideal for those looking to meet functional goals at an accelerated rate as compared to traditional therapy.

This session introduces parents to TMIP and addresses how it can:
  • Improve independence with activities of daily living (self-care, feeding & dressing)
  • Improve body awareness
  • Improve motor skills
  • Improve balance and coordination

Speakers
JC

Jessica Costa, PT, DPT

Physical Therapist, Johns Hopkins All Children's Hospital


Thursday July 6, 2017 10:00am - 11:00am
TBA

10:00am

Assistive Communication Devices and Apps for the Non-Verbal/Limited Verbal Child

Speaking is how we communicate with those around us.  It allows us to interact with other people and influence the world around us to get our needs met.  But for many children, verbal speech is not an option.  These children, often labeled as “non-verbal”, may have plenty that they want to communicate with us, but they are unable to speak the words.  However, every child has the right to communicate and the fact that these children cannot speak should not take that right away from them.

For these children, there is another option.  The term Alternative and Augmentative Communication (AAC) describes any means of communication, aside from traditional speech, that allows someone to use language.  This can include using pictures, gestures, sign language, visual aids, or speech-output devices like computers. 

This session will show you exactly how to try some of these techniques to help a non-verbal child learn to communicate.


Speakers
avatar for Carrie Clark

Carrie Clark

Owner, Speech and Language Kids
Carrie Clark, CCC-SLP, is the owner of the online resource Speech and Language Kids. A graduate of Truman State University in Kirksvile, Missouri, Ms. Clark worked in the Columbia Public Schools in Columbia, Missouri in the 3-5 years program. Although she loved all of the children she worked with and enjoyed the job thoroughly, she found herself longing to be able to provide even more assistance to the families she worked with. Through the... Read More →


Thursday July 6, 2017 10:00am - 11:00am
TBA

10:00am

Gadget Expo and Resource Fair begins
25 exhibitors join us to share gadgets, information, services, and products with you. Be sure to swing by!

Thursday July 6, 2017 10:00am - 5:00pm
Florida 5 - 7

12:00pm

Group Lunch - By Region
Thursday July 6, 2017 12:00pm - 1:15pm
Orange Ballroom

1:30pm

Orientation and Mobility Training For Visually Impaired Children and Adults
Orientation and Mobility Specialists provide instruction that can help you develop or re-learn the skills and concepts you need to travel safely and independently within your home and in the community. These are services you can access throughout the lifespan - whether in preschool or school programs, as well as in community-based adult settings.  

This session introduces you to orientation and mobility training and will help you understand how this service can benefit you or your child.

Speakers
CB

Catherine Bacik, MA, COMS

Certified Orientation and Mobility Specialist, Lighthouse Central Florida


Thursday July 6, 2017 1:30pm - 2:30pm
TBA

1:30pm

Guardianship and Conservatorship

Every adult is assumed to be capable of making his or her own decisions unless a court determines otherwise. If an adult is incapable of making responsible decisions due to a cognitive disability, the court will appoint a substitute decision maker, often called a "guardian," but in some states called a "conservator" or other term. Guardianship is a legal relationship between a competent adult (the "guardian") and a person who because of incapacity is no longer able to take care of his or her own affairs (the "ward").

This session will introduce attendees to how guardianship or conservatorship is attained for an adult with cognitive disabilities.


Speakers
avatar for Carolyn Sawyer, Esq.

Carolyn Sawyer, Esq.

Founder, Sawyer & Sawyer
Carolyn Sawyer's professional focus is Medicaid planning, social security disability, estate planning, guardianships; trust administration, probate, and special needs trusts. | | Carolyn H. Sawyer was born in Dallas, Texas, and admitted to the Florida Bar in 1994. She is admitted to practice before the Supreme Court of Florida and all Florida courts. She received her B.S. in Physics from Southern Methodist University, her Masters Degree in... Read More →


Thursday July 6, 2017 1:30pm - 2:30pm
TBA

1:30pm

Autism and epilepsy

The relationship of autism spectrum disorders (ASD) in children with epilepsy is well known. This session will emphasize early diagnosis of ASD, before it is ASD, and how to recognize the early features of social cognition and the importance of early intervention in epilepsy from a neurodevelopment perspective.  


Moderators
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →

Speakers
avatar for Roberto Tuchman, MD

Roberto Tuchman, MD

Director, Autism and Neurodevelopmental Programs, Nicklaus Children's Hospital
Dr. Tuchman is presently the Director of Autism and Neurodevelopment Programs at Nicklaus Children's Dan Marino Outpatient Center. He was the Founding Director of the Nicklaus Children's Dan Marino Outpatient Center for children with developmental disorders serving as its executive medical director from its start in 1998 thru 2001. | | Dr. Tuchman is an Associate Professor of Neurology at Nicklaus Children's Hospital in association with the... Read More →


Thursday July 6, 2017 1:30pm - 3:00pm
Florida Ballroom 4

1:30pm

Kinesiotaping For Hemiparesis
Limited Capacity seats available

This is a hands-on, interactive workshop to teach you how to use kinesiotape to treat wrist, arm, and foot contracture as well as shoulder subluxation.

Please wear comfortable clothing as you will be on the floor for much of this session. You will team up with another attendee and take turns kinesiotaping one another.  If you are only able to use one hand, no worries! Just let the instructor know ahead of time and you will be provided with some extra help. 

There is a $10 fee for this workshop to cover supplies. BRING YOUR OWN YOGA MAT. 

Thursday July 6, 2017 1:30pm - 3:30pm
TBA

3:00pm

Special Needs Trusts and the ABLE Act
Financial planning for families with special needs is difficult under the best of circumstances. As parents of individuals with disabilities, we know that every one of our decisions has long-lasting ramifications that can have a huge impact on the quality of our children’s lives in the future. Our choices today may mean the difference between our children living successfully, with financial independence, and watching them languish on wait lists, fighting to access benefits, services, living options, etc.

This session will provide parents with an overview of special needs trusts and the ABLE Act, two tools that are crucial for preserving your disabled child's assets.

Speakers
avatar for Carolyn Sawyer, Esq.

Carolyn Sawyer, Esq.

Founder, Sawyer & Sawyer
Carolyn Sawyer's professional focus is Medicaid planning, social security disability, estate planning, guardianships; trust administration, probate, and special needs trusts. | | Carolyn H. Sawyer was born in Dallas, Texas, and admitted to the Florida Bar in 1994. She is admitted to practice before the Supreme Court of Florida and all Florida courts. She received her B.S. in Physics from Southern Methodist University, her Masters Degree in... Read More →


Thursday July 6, 2017 3:00pm - 4:00pm
TBA

3:00pm

How To Advocate For Your Medically-Complicated Child
Talking to physicians and other medical professionals can sometimes be overwhelming for parents of medically-complicated children. This session will discuss the new movement toward patient-centered care and how you can best advocate for your child in the medical environment.

Speakers
avatar for Sue Yudovin, RN, MN, CPNP

Sue Yudovin, RN, MN, CPNP

Sue Yudovin RN, MN, CPNP is a retired pediatric nurse practitioner who spent most of her career in the Division of Pediatric Neurology at the David Geffen, UCLA, School of Medicine. She has worked with thousands of families with children who have drug-resistant seizures and have required epilepsy surgery. | | Sue Yudovin completed her master’s degree and nurse practitioner certificate at UCLA Graduate School of Nursing.
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →


Thursday July 6, 2017 3:00pm - 4:00pm
TBA

3:00pm

Speech Therapy for Dysarthria, Articulation, and Pragmatics
Some children after epilepsy surgery have trouble with various areas of speech, including articulation and pragmatics. This session will provide you with tips and tricks to help your child improve these areas of expressive speech production.

Speakers
avatar for Carrie Clark

Carrie Clark

Owner, Speech and Language Kids
Carrie Clark, CCC-SLP, is the owner of the online resource Speech and Language Kids. A graduate of Truman State University in Kirksvile, Missouri, Ms. Clark worked in the Columbia Public Schools in Columbia, Missouri in the 3-5 years program. Although she loved all of the children she worked with and enjoyed the job thoroughly, she found herself longing to be able to provide even more assistance to the families she worked with. Through the... Read More →


Thursday July 6, 2017 3:00pm - 4:00pm
TBA
 
Friday, July 7
 

9:00am

Using Visual Schedules To Promote Independence And Success

Most of us do not follow a visual schedule for our time at home. However, individuals with special needs often have greater difficulties coping with unstructured time than neurotypical people and benefit from increased structure in their lives. The advantages to using a visual schedule with individuals with special needs include:

  • It utilizes the individual’s visual strengths and therefore provides a receptive communication system to increase understanding;
  • It helps the individual to learn new things and broaden their interests;
  • It provides tools that allow the individual to use skills in a variety of settings;
  • It can increase the individual’s flexibility;
  • It helps the individual remain calm and reduces inappropriate behaviors; and
  • It helps the individual to develop independence and resulting self-esteem.
This session will introduce parents and caregivers to the concept of using visual schedules at home and at school

Speakers
avatar for Joanna Couch, M. Ed.

Joanna Couch, M. Ed.

Coordinator, Center for Autism and Related Disabilities - University of Central Florida
Joanna joined UCF-CARD in October 2015. She received her undergraduate degree in Special Education: Varying Exceptionalities and her Master’s in Educational Leadership from the University of South Florida. Joanna currently holds a Florida Professional Teaching Certification for Elementary Education K-6, Middle Grades 5-9, Exceptional Student Education K-12, and Educational Leadership, as well as endorsements in Autism Spectrum Disorders and... Read More →


Friday July 7, 2017 9:00am - 10:00am
TBA

9:00am

9:00am

Social Security and the ABLE Act
Friday July 7, 2017 9:00am - 10:00am
TBA

9:00am

A Step-By-Step Guide to Individual Education Plans - PT 1
This is an intensive, multi-hour program which will address the nuts and bolts of developing an appropriate IEP for your child.  We will break for lunch at 11:45 and return at 1:30 to finish the sessions.

Please bring a copy of your child's IEP to this session. 

Speakers
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →
avatar for Jennifer Laviano, JD

Jennifer Laviano, JD

Owner, Jennifer Laviano, Attorney at Law
Ms. Laviano has dedicated her law practice entirely to the representation of children and adolescents with disabilities whose families are in disagreement with their public school districts. Her representation of children with special needs encompasses the full spectrum of Civil Rights advocacy under the IDEA (Individuals with Disabilities Education Act), from attendance at IEP Team meetings and Mediation, to zealous and experienced litigation in... Read More →
avatar for Audrey Vernick

Audrey Vernick

Director of Educational Training and Advocacy, The Brain Recovery Project
Audrey Vernick serves as the Director of Educational Training and Advocacy for The Brain Recovery Project and is responsible for coordinating the design, development, and launch of its new Educational Advocate Program which commenced the summer of 2016. Audrey is certified by the Council of... Read More →


Friday July 7, 2017 9:00am - 10:30am
TBA

10:30am

Post-Secondary Education for Adults with Intellectual Disability
Did you know that postsecondary opportunities are available for students with intellectual disabilities to study alongside same-aged peers on a college campus?  Students may take courses, practice social strategies, and learn employability skills while engaging with others in a college environment.  

Speakers
avatar for Kathleen Becht

Kathleen Becht

Director, Florida Consortium on Inclusive Higher Education
Kathleen Becht is Director of the Florida Consortium on Inclusive Higher Education. There, she enables teachers and families of children with disabilities to strive toward societal acceptance and understanding of individuals with disabilities, and to pursue the highest expectations for individuals with disabilities in our schools and communities. Her work includes advocacy in the disability field at the family, grass roots, school, district... Read More →


Friday July 7, 2017 10:30am - 11:30am
TBA

10:30am

All About Siblings
The impact of having a sibling with a disability differs from child to child. Some children are staunch protectors, while others may foster bitterness or resentment at some point in their lives.  This session introduces parents to the different emotions siblings may face in their relationship with their differently-abled brother or sister.

Speakers
avatar for Kim Snoeblen

Kim Snoeblen

Coordinator of Education and Training Programs, Center for Autism and Related Disabilities - University of Central Florida
Kim received a dual Bachelor's degree in Psychology and Education from Rutgers University. She holds a professional teaching certificate and has previously worked as both a regular education and exceptional education teacher. Kim is also a Board Certified Assistant Behavior Analyst and is completing her masters in Marriage and Family Therapy. Prior to moving to Florida, Kim worked as a discrete trial therapist and Coordinator at the Eden... Read More →


Friday July 7, 2017 10:30am - 11:30am
TBA

10:30am

A Step-By-Step Guide to Individual Education Plans - PT 2
This is an intensive, multi-hour program which will address the nuts and bolts of developing an appropriate IEP for your child.  We will break for lunch at 11:45 and return at 1:30 to finish the sessions.

Please bring a copy of your child's IEP to this session. 

Speakers
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →
avatar for Jennifer Laviano, JD

Jennifer Laviano, JD

Owner, Jennifer Laviano, Attorney at Law
Ms. Laviano has dedicated her law practice entirely to the representation of children and adolescents with disabilities whose families are in disagreement with their public school districts. Her representation of children with special needs encompasses the full spectrum of Civil Rights advocacy under the IDEA (Individuals with Disabilities Education Act), from attendance at IEP Team meetings and Mediation, to zealous and experienced litigation in... Read More →
avatar for Audrey Vernick

Audrey Vernick

Director of Educational Training and Advocacy, The Brain Recovery Project
Audrey Vernick serves as the Director of Educational Training and Advocacy for The Brain Recovery Project and is responsible for coordinating the design, development, and launch of its new Educational Advocate Program which commenced the summer of 2016. Audrey is certified by the Council of... Read More →


Friday July 7, 2017 10:30am - 11:45am
TBA

10:30am

Everyday Conversation - Improving Your Communication Skills
Initiating conversations and knowing when to speak up in everyday conversation can sometimes be challenging for teens and young adults who have had epilepsy surgery in childhood. This workshop will teach you how to "break the ice", avoid those awkward moments, and understand the "give and take" of social conversation.

Speakers
avatar for Amy Fritz-Ocock, Ph.D., CCC-SLP

Amy Fritz-Ocock, Ph.D., CCC-SLP

Coordinator of Education and Training Programs, Center for Autism and Related Disabilities - University of Central Florida
As a licensed and ASHA certified speech-language pathologist since 1999, Amy has extensive experience providing services to individuals with a variety of communication disorders while specializing in ASD. She is certified in the Hanen More Than Words and Talkability programs. Amy earned a BA in English and reading education from Capital University and a MA in speech-language pathology from The Ohio State University. While serving as an SLP in... Read More →


Friday July 7, 2017 10:30am - 12:00pm
TBA

12:00pm

Group Lunch - By Etiology
Sit with families whose children have the same underlying diagnosis as your child. Make new friends and connect with old ones!

Friday July 7, 2017 12:00pm - 1:15pm
Orange Ballroom

1:30pm

Neuropsychological Assessments
Speakers
avatar for Susan Crum, PhD

Susan Crum, PhD

Owner, Central Florida Neuropsychology


Friday July 7, 2017 1:30pm - 2:30pm
TBA

1:30pm

All About Neurological Music Therapy
Neurological music therapy is based on a neuroscience model of music perception and production and the influence of music on functional changes in nonmusical brain and behavior functions. Music therapy is known to help surivors of stroke recover expressive speech. It can also be used to improve cognitive, sensory and motor dysfunctions due to neurological disorders.

This session will introduce you to music therapy and will help you decide if it is an appropriate intervention for your child.

Speakers
avatar for Tamela Ponder

Tamela Ponder

Owner, Joyful Music Therapy
Tamela Ponder, MT-BC - | Neurologic Music Therapist, Executive Director, Founder | Board-certified Music Therapist and member of the American Music Therapy Association, Tamela began serving the special needs community of Central Florida in 2008. She holds a Bachelor's degree in Music Therapy from Loyola University (New Orleans) and an Associate of Arts degree in Music Education. She also completed graduate studies as an Infant and Toddler... Read More →


Friday July 7, 2017 1:30pm - 2:30pm
TBA

1:30pm

Applied Behavior Analysis and Behavior Basics

Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.

This session will introduce attendees to the principles of ABA therapy, as well as provide them with techniques to provide address challenging behaviors.



Speakers
avatar for Jennifer Cicia, M. Ed.

Jennifer Cicia, M. Ed.

Coordinator of Education and Training Programs, Center for Autism and Related Disabilities - University of Central Florida
Jennifer joined the Center for Autism and Related Disabilities in November, 2011. She received a BA in Psychology and an M.Ed in Exceptional Education, both from James Madison University in Harrisonburg, VA. Jennifer started working with children on the autism spectrum in 2003 as an in-home specialist with Matthew’s Center for Visual Learning in Manassass, VA. As an in-home specialist, Jennifer focused on facilitating communication... Read More →


Friday July 7, 2017 1:30pm - 3:00pm
TBA

1:30pm

A Step-By-Step Guide to Individual Education Plans - PT 3
This is an intensive, multi-hour program which will address the nuts and bolts of developing an appropriate IEP for your child.  We will break for lunch at 11:45 and return at 1:30 to finish the sessions.

Please bring a copy of your child's IEP to this session. 

Speakers
avatar for Jennifer Cicia, M. Ed.

Jennifer Cicia, M. Ed.

Coordinator of Education and Training Programs, Center for Autism and Related Disabilities - University of Central Florida
Jennifer joined the Center for Autism and Related Disabilities in November, 2011. She received a BA in Psychology and an M.Ed in Exceptional Education, both from James Madison University in Harrisonburg, VA. Jennifer started working with children on the autism spectrum in 2003 as an in-home specialist with Matthew’s Center for Visual Learning in Manassass, VA. As an in-home specialist, Jennifer focused on facilitating communication... Read More →
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →
avatar for Audrey Vernick

Audrey Vernick

Director of Educational Training and Advocacy, The Brain Recovery Project
Audrey Vernick serves as the Director of Educational Training and Advocacy for The Brain Recovery Project and is responsible for coordinating the design, development, and launch of its new Educational Advocate Program which commenced the summer of 2016. Audrey is certified by the Council of... Read More →


Friday July 7, 2017 1:30pm - 3:00pm
TBA

3:00pm

A Step-By-Step Guide to Individual Education - PT 4
This is an intensive, multi-hour program which will address the nuts and bolts of developing an appropriate IEP for your child.  We will break for lunch at 11:45 and return at 1:30 to finish the sessions.

Please bring a copy of your child's IEP to this session. 

Speakers
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →
avatar for Jennifer Laviano, JD

Jennifer Laviano, JD

Owner, Jennifer Laviano, Attorney at Law
Ms. Laviano has dedicated her law practice entirely to the representation of children and adolescents with disabilities whose families are in disagreement with their public school districts. Her representation of children with special needs encompasses the full spectrum of Civil Rights advocacy under the IDEA (Individuals with Disabilities Education Act), from attendance at IEP Team meetings and Mediation, to zealous and experienced litigation in... Read More →
avatar for Audrey Vernick

Audrey Vernick

Director of Educational Training and Advocacy, The Brain Recovery Project
Audrey Vernick serves as the Director of Educational Training and Advocacy for The Brain Recovery Project and is responsible for coordinating the design, development, and launch of its new Educational Advocate Program which commenced the summer of 2016. Audrey is certified by the Council of... Read More →


Friday July 7, 2017 3:00pm - 4:30pm
TBA

3:00pm

My Body, My Self - Addressing Challenging Concepts and Situations
Dating, internet safety, and circles of intimacy and relationships are important for everyone to understand. When is it appropriate to hug a stranger? What are the risks associated with finding love online?

This session will help teens and adults understand how to keep themselves and their bodies safe.

Speakers
avatar for Kimberly Spence, Ph.D.

Kimberly Spence, Ph.D.

Coordinator, Center for Autism and Related Disabilities - University of Central Florida
Dr. Spence received her undergraduate degree in Secondary English Language Arts Education, her Master's in Varying Exceptionalities, and her Ph.D. in Special Education from the University of Central Florida. Prior to joining CARD, Kim worked within public and private settings as a Teacher and Behavior Specialist. She published her ground-breaking research involving the use of hand-held technology by individuals with autism spectrum... Read More →


Friday July 7, 2017 3:00pm - 4:30pm
TBA
 
Saturday, July 8
 

9:00am

Brain Circuits - What Do They Do?
Your brain's neurons, connections, and lobes don't work in isolation. Functions and Information are processed by many different areas of the brain that are connected by circuits. When these circuits are interrupted, whether by seizures or by epilepsy surgery, issues with attention and social cognition can occur.

Understanding how your child's brain circuits have been interrupted will help you advocate for their educational success, as well as help you understand their behaviors and challenges. 

Moderators
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →

Speakers
avatar for Lucina Uddin, PhD

Lucina Uddin, PhD

Assistant Professor of Psychology, Univesity of Miami
Dr. Lucina Uddin's research focuses on the relationship between brain connectivity and cognition in typical and atypical development. Within a cognitive neuroscience framework, her research combines functional connectivity analyses of resting-state functional magnetic resonance imaging data and structural connectivity analyses of diffusion tensor imaging data to examine the organization of large-scale brain networks supporting attention and... Read More →


Saturday July 8, 2017 9:00am - 9:45am
TBA

10:00am

MEDICAL PANEL: Which Surgeries To Consider To Stop Seizures
Speakers
avatar for George Jallo, MD

George Jallo, MD

Medical Director, Institute for Brain Protection Sciences, Johns Hopkins All Children's Hospital
George Jallo, M.D., is medical director of the Johns Hopkins All Children's Hospital for Institute Brain Protection Sciences (IBPS) and clinical practice director of Pediatric Neurosurgery and joined the team in September 2015. This new multidisciplinary institute unites clinicians, researchers and educators in a comprehensive program to promote optimal neurodevelopment early in life and provide state-of-the-art care for children with injuries or... Read More →


Saturday July 8, 2017 10:00am - 10:30am
TBA

10:00am

Person-Centered Thinking and Lifestyle Planning
Speakers
avatar for Mona Lara

Mona Lara

Corporate Training and Development Coordinator, Outreach Health Services
Person Centered Practices-An Overview will give an overview of Person Centered Thinking so that participants can gain knowledge and skills to enable them to keep the person receiving support at the center of planning and services. Person Centered Practices enables people to make a positive change in the lives of those receiving services so they can have the life they desire and value.


Saturday July 8, 2017 10:00am - 11:00am
TBA

10:30am

MEDICAL PANEL: Hydrocephalus After Hemispherectomy And Other Resective Surgeries
Hydrocephalus is a significant concern after hemispherectomy and often other resective surgeries. But why? This session will provide you with an overview of the brain's ventricular system, the Monroe Kellie hypothesis which explains why disrupting the ratio of blood-to-brain-to-cerebrospinal fluid can result in hydrocephalus, where shunts are commonly placed, and difficulties diagnosing hydrocephalus when imaging shows no change in ventricle size but the child is symptomatic, over-draining issues, and other challenges.  

Speakers
avatar for Aria Fallah, MD, MSc, FRCSC, FAANS

Aria Fallah, MD, MSc, FRCSC, FAANS

Assistant Professor, Neurosurgery, Mattel Children's Hospital at UCLA
Dr. Aria Fallah is a fellowship trained pediatric neurosurgeon who practices at UCLA Mattel Children’s Hospital and Ronald Reagan UCLA Medical Center. He is an Assistant Professor of Neurosurgery and Pediatrics at the David Geffen School of Medicine at UCLA. He is board certified in Neurosurgery by the Royal College of Physicians and Surgeons. He is a thoughtful and meticulous surgeon specialized in research and treatment of pediatric... Read More →


Saturday July 8, 2017 10:30am - 11:00am
Florida Ballroom 4

11:00am

MEDICAL PANEL: When Seizures Return - Reliability of Post-Operative EEGs and MRIs
Moderators
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →

Speakers
avatar for James Baumgartner, MD

James Baumgartner, MD

Surgical Director, Epilepsy, Florida Hospital for Children
James E. Baumgartner, MD is a board-certified pediatric neurosurgeon who specializes in traditional and minimally invasive surgical procedures for children and adolescents who are suffering from epilepsy or seizure-related disorders. He has published numerous peer-reviewed journal articles, abstracts and book chapters, as well as presented nationally and internationally. Dr. Baumgartner has earned a reputation in his field for his surgical... Read More →
avatar for Ki Hyeong Lee, MD

Ki Hyeong Lee, MD

Medical Director, Comprehensive Pediatric Epilepsy Center, Florida Hospital for Children
Dr. Lee serves as the Medical Director of the Comprehensive Pediatric Epilepsy Center at the Walt Disney Pavilion at Florida Hospital for Children. The Epilepsy Center for Kids is one of the largest and most comprehensive programs in the nation, offering patients the most advanced diagnostics, technologies and treatments available. Our multidisciplinary model of care allows the team to access a round-the-clock Epilepsy Monitoring Unit, 3T MRI... Read More →


Saturday July 8, 2017 11:00am - 11:30am
TBA

11:30am

MEDICAL PANEL: Q AND A
Saturday July 8, 2017 11:30am - 12:00pm
Florida Ballroom 4

12:00pm

Group Lunch - By Surgery Type
Saturday July 8, 2017 12:00pm - 1:15pm
Orange Ballroom

1:30pm

Endocrine Issues After Epilepsy Surgery
Saturday July 8, 2017 1:30pm - 2:30pm
TBA

1:30pm

Learning To Read After Epilepsy Surgery
In typically-developing persons, reading is primarily a function of the left hemisphere of the brain within circuits involving the temporal lobe. Reading after hemispherectomy or other resection surgeries which remove the temporal lobe in childhood can be challenging. One published research paper shows that only 42% of children after hemispherectomy read appropriately for their age. But what can be done to help these children access literacy? Joining our conference is Dr. Joanna Christodolou, a world renowned literacy researcher who co-authored a recent paper which says that after hemispherectomy, children must have comprehensive reading evaluations. Dr. Christodolou will talk about the neural basis of reading, why challenges like homonymous hemianopsia can impact reading, and which reading assessments should be used to discover a child's strengths and weaknesses in the five parameters of reading. 

Moderators
avatar for Monika Jones, JD

Monika Jones, JD

President, The Brain Recovery Project
Monika Jones serves as Program Chair and is CEO and Board Chair of The Brain Recovery Project, where she served as the principal investigator for the NIH research conference grant for the 2014 International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-rehabilitation After Cerebral Hemispherectomy. In additional to her work with The Brain Recovery Project, she is an active member of the Council of Parent and Attorney... Read More →

Speakers
avatar for Joanna Christodolou

Joanna Christodolou

Adjunct Lecturer, Harvard University and MIT
Joanna A. Christodoulou works at the intersection of education and neuroscience. Her program of research, conducted at MIT in the Gabrieli Lab and at MGH Institute of Health Professions, focuses on brain and behavior correlates of development, difficulties, and intervention effects for reading. Goals of this work include 1) informing our understanding of reading challenges regarding how they are defined and conceptualized; 2) investigating... Read More →


Saturday July 8, 2017 1:30pm - 3:00pm
TBA

3:00pm

3:00pm

Transitioning To Adult Care
Saturday July 8, 2017 3:00pm - 4:00pm
TBA

5:00pm

Closing Banquet
Join Peter Pan, Tinkerbell, and their band of pirates as we enjoy the final evening of the conference together. Full dinner banquet including cash bar.

Saturday July 8, 2017 5:00pm - 7:30pm
Florida Ballroom