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2019 Conference

Our 14th International CHARGE Syndrome Conference: Deep in the Heart of CHARGE was held August 2-5, 2019 in Dallas, Texas.  Information on our program, including speaker handouts and our conference program book as well as our 2019 conference sponsors can be found via the links below.

2019 Conference Program & Agenda

Official Conference Program Book – 2019

Conference Handouts – 2019

I just love being in the CHARGE bubble, walking around the hotel and seeing so many children like mine, the cochlear implants, tubes, and flappy hands and just feeling we belong and don’t stand out.  — Karen Tilley

Emotional as I leave the island…where hearing aids, glasses, canes, wheelchairs, walkers, trachs, feeding tubes, tics, tantrums are looked at with a kind smile and word of encouragement rather than clearing the room. — Lesley Zier

We had such a great time!! It is amazing to realize what a wonderful community we have!  — Peter Bucklin

Reflecting upon the wonderful Dallas conference I have been calculating all the ways in which it promotes the interests and well-being of people with CHARGE syndrome … The end of each conference marks the start of a new era for everyone involved with the syndrome. — David Brown

Let’s talk about what this conference did for Sadie the sibling of a child with CHARGE syndrome. Sadie felt she could be herself, relax and enjoyed camp … In a world where a lot of time goes to their siblings, it was nice to make friends who understand.  — Gloria Bowles

I am still processing our time this past week in Dallas learning, laughing, hugging and just being with humans that allow me and my most important person to fully be ourselves. There is something magical about a space where everyone is accepted. I know this may not make sense to others that see only sadness and challenges when speaking about CHARGE. But I will be forever grateful for this community that has lifted me up in dark times and celebrated each inch-stone with us! — Lianne DeVerter

Read More About 2019 Conference Program & Agenda

HANDOUTS: The electronic handouts submitted by presenters are available here. Please note this is a voluntary and not all presenters choose to submit handouts.

2019 Conference Presenters List & Topics


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


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


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


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

“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

Medical Management  Lucy Marcheschi, Cincinnati Children’s Hospital Medical Center


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