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. 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 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 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
2019 Conference Presenters List & Topics
EDUCATION
BEHAVIOR & COMMUNICATION
FAMILY SUPPORT
ADOLESCENCE & ADULTHOOD
