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Conference Program

Please Note: Conference agenda and handouts will be available here 2-4 weeks before conference.

Conference Presenters Click Here

2019 Conference Presenters List & Topics

EDUCATION

APE Specialists and Parents Collaborate in a Dynamic Discussion of Physical Gross Motor Needs, Fitness, and Sport for Children with CHARGE

Linda Hilgenbrinck, Adapted Physical Education Specialist, Denton Independent School District

Interpreter or Intervener? Identifying the Best Role for Communication Support in the Classroom

Susanne Morrow, New York Deaf-Blind Collaborative

Interveners – Key Members of the Educational Team

Beth Kennedy, M.Ed., DB Central: Michigan’s Training & Resource Project

Looking and Feeling Like a Pro: Preparations for Walking into the IEP Meeting

Savannah Trice, Bulldog CHARGE Syndrome Research Laboratory, Mississippi State University

Meeting the Needs of Students with CHARGE Syndrome with Proficient Communication Skills in General Education 

Robbie Blaha, Texas School for the Blind and Visually Impaired

Motor Skills, Balance, and Physical Activity in Children with CHARGE Syndrome

Pamela Beach, SUNY Brockport

Preparing the Body and the Environment…Orientation and Mobility for Individuals with CHARGE Syndrome

Suzanne Dinwiddle, Tennessee Deaf-Blind Project

Proprioceptive Training

Elizabeth Foster, Ph.D., California State Polytechnic University

Taking CHARGE of the Classroom: A Teacher’s Perspective on Sensory Strategies in the Classroom

Sharon Stelzer, M.Ed., Perkins School for the Blind

Using Photos to Tell Your Child’s Story to their Educational Team

Donna Carpenter, University of Kentucky

BEHAVIOR & COMMUNICATION

Application of Behavioral Strategies to Address Feeding Difficulties Among Children with CHARGE Syndrome

Hallie Smith, Licensed Psychologist, Board Certified Behavior Analyst, Pediatric Feeding Disorders Program, Kennedy Krieger Institute

Autism or CHARGE? Why Autism and CHARGE Syndrome Can Look So Much Alike and Identifying Effective Educational and Behavioral Interventions for These Learners

Julie Maier and Maurice Belote, California Deafblind Services

Creating Communication Opportunities and Diversifying Choice-Making

Susan Bashinski, Ed.D., Missouri Western State University

From Interaction to Emerging Language: The DeafBlind Communicator

Chris Montgomery, Texas School for the Blind and Visually Impaired, DeafBlind Outreach Department

“I Wish They Could Tell Me What They Need”: Increasing Communication Through Behavior

Kasee Stratton, Mississippi State University

Linking Assessment to Intervention: Functional Analyses and CHARGE

Hailey Ripple, Bulldog CHARGE Syndrome Research Laboratory, Mississippi State University

Promoting Social Skill Development in Children with CHARGE

Megan Schmittel, Central Michigan University and Perkins School for the Blind

That’s Weird. Why Would My Child Act This Way? Trying to Make Sense Out of Behavior.

Timothy Hartshorne, Ph.D., Central Michigan University

“Why Are Children with CHARGE Syndrome so Lazy?” 

David Brown, Freelance Deafblind Educational Specialist

MEDICAL & RESEARCH

A Visual Understanding of the Ophthalmic Pathway in CHARGE

Eniolami Dosunmu, MD, Cincinnati Children’s Hospital Medical Center

Airway and Anesthesia Risks for Individuals with CHARGE Syndrome. How Can You Advocate for Best Practice?

Dr. Kim Blake, Dalhousie University/IWK Health Centre and Catherine Hart, MD, Cincinnati Children’s Hospital Medical Center

An Interactive Seminar in Genetics: All You Want to Know About the Genetics of CHARGE Syndrome 

Christa, de Geus, MD, University Medical Center Groningen

Does your gut talk to you? Review of Gastrointestinal (GI) Motility and the Connection to the Vagus Nerve and Microbiome in CHARGE Syndrome.

Kim Blake, MD, Dalhousie University/IWK Health Centre

Ear and Hearing Management in CHARGE

Daniel Choo, MD, Cincinnati Children’s Hospital

Feeding difficulties and Aspiration in CHARGE Syndrome

Catherine Hart, MD, Cincinnati Children’s Hospital

Growth in CHARGE Syndrome

Dieuwerke Dijk, University Medical Center Groningen

Sleep in Children with CHARGE Syndrome

Christine Heubi, MD, Cincinnati Children’s Hospital

The Endocrine System in CHARGE Syndrome

Meilan Rutter, MD, Division of Endocrinology, Cincinnati Children’s Hospital Medical Center

Updates on Research in CHARGE

Donna Martin, University of Michigan

FAMILY SUPPORT

CHARGE 101 – 103, Introduction for New Families

Meg Hefner, Saint Louis University

Kate Beals, OTR/L, Southland Pediatric Therapy

Laurie Denno

Rob Last, CHARGE Syndrome Association of Australia and New Zealand

Emma Mayes, Deafblind Services Minnesota

Charting The Journey Through a Future Care Plan

Mary Ehlert, Protected Tomorrows, Inc.

“CHARGE Syndrome is Only a Part of You!”: How and When to Tell Your Child They Have CHARGE Syndrome

Haley Grant, Bulldog CHARGE Syndrome Research Laboratory, Mississippi State University

Counseling Parents of Children with CHARGE

Timothy Hartshorne, Ph.D., Central Michigan University

Friendships, Belonging and Connection

Rob Last, CHARGE Syndrome Association of Australia and New Zealand

Sensing Connections: Understanding the Impact of Grief on Families 

Megan Cote, National Center on Deaf-Blindness

Sibling Panel

Mallorie Beavers and Sarah Lent

Win:Win. When Parent and Nurse Become Co-Advocates

Angela Arra, IWK Health Centre and Lucy Marcheschi, Cincinnati Children’s Hospital Medical Center

ADOLESCENCE & ADULTHOOD

Adults with CHARGE panel 

Days of Our Lives – A Snapshot of Adulthood (Panel)

Sheri Stanger, MA, Ed.M., CHARGE Syndrome Foundation and Djenne-Amal Morris

HKNC Programs Supporting Transition

Molly Sinanan, Helen Keller National Center

Oh, the Places They Could Go: Why Your Child Needs a Transition Plan

Megan Anderson, Bulldog CHARGE Syndrome Research Laboratory, Mississippi State University

Organizing Contexts for Adult Life Activities During Transition Planning

David Wiley, Texas School for the Blind and Visually Impaired

Sex Hormones, Puberty and Teaching Safe Sexuality

Kasee Stratton, Ph.D., NCSP, Bulldog CHARGE Syndrome Research Laboratory, Mississippi State University and Jeremy Kirk, MD, FRCPCH, FRCP, Birmingham Women’s and Children’s Hospital UK

Unlocking the Door to an Enviable Life: Person-Centered Planning Benefits, Strategies, and Case Examples

Nancy Salem-Hartshorne, Ph.D., Delta College

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