The CHARGE Syndrome Foundation is pleased to provide you with webinars on a variety of topics which affect individuals with CHARGE and their families. If you have a suggestion for a future webinar topic, please send it to info@chargesyndrome.org.
Ask the Expert Series Dates:
(Click on past dates to view the recordings and upcoming dates to register)
2023
20 de marzo – Todos los detalles de la Conferencia!
No se pierda la oportunidad de aprender todo lo que hay que saber sobre nuestra 15.ª Conferencia Internacional sobre el Síndrome de CHARGE, que tendrá lugar del 20 al 23 de julio de 2023 en Rosen Shingle Creek en Orlando, FL. ¡Únase a nosotros mientras discutimos todos los detalles de la Conferencia! Conozca qué puede esperar su familia, qué sesiones y eventos se ofrecerán, formas en que puede financiar su viaje a Florida, ¡incluso qué debe empacar!
March 13 – All About Conference
Learn all there is to know about our 15th International CHARGE Syndrome Conference, taking place July 20-23, 2023 at Rosen Shingle Creek in Orlando, FL.
Join us as we discuss all the ins and outs of Conference! Learn what your family can expect, what sessions and events will be offered, ways you can fund your trip to Florida, even what you should pack!
February 27 – Postsecondary Transitions
The panel includes:
- Jodie Beavers, the proud mother of a 20 year old son with CHARGE Syndrome named Nolan. She has been a Special Educator for 21 years and is now the MTSS Coordinator for Shepherd Public Schools in Michigan. She also serves as the Michigan State Liaison for the CHARGE Syndrome Foundation.
- Joanne Lent, the CHARGE Syndrome Foundation secretary. Her son Eddie, 23, recently aged out of school and now lives in a group home in New Jersey.
- Minnie Lambert, mother to Andrew, who attends Perkins School for the Blind in MA. Minnie serves as the South Carolina State Liaison for the CHARGE Syndrome Foundation.
- Nancy Salem-Hartshorne, Ph.D., Professor of Psychology at Delta College and a Nationally Certified School Psychologist. She has authored numerous articles and book chapters about developmental outcomes for individuals with CHARGE syndrome. Her son Jacob, 34, is a positive influence on all those who encounter him. He is DeafBlind, has CHARGE syndrome, lives in his own home, and is integrated into his home community through individualized supported work and community engagement. Nancy is an advocate for individuals with disabilities, teamwork, thorough planning, and forward thinking for quality life outcomes for all individuals.
2022
September 29 – Tim Hartshorne, Behaviors Associated with CHARGE Syndrome
Tim Hartshorne is a retired professor of psychology and has been researching and presenting about CHARGE syndrome since 1993, motivated by the birth of his son Jacob, who has CHARGE, in 1989.
In 1999 Tim established the CHARGE Syndrome Research Lab at Central Michigan University. His particular interest is in understanding the challenging behavior exhibited by many individuals with CHARGE. He is editor, along with, Meg Hefner, Sandy Davenport and Jim Thelin, of the book CHARGE Syndrome.
May 19 – Lily Slavin, Educational experiences of individuals with CHARGE and the Checklist of Educational Needs for Individuals with CHARGE Syndrome
The “Checklist of Educational Needs for Individuals with CHARGE Syndrome” is a tool that can be used by school teams and early intervention specialists to help guide educational services for individuals with CHARGE syndrome. Since CHARGE syndrome is extremely complex and variable, school teams must understand these five domains in which individuals with CHARGE are commonly affected: medical, sensory, communication, developmental, behavioral. During the webinar you will understand how the checklist could be utilized by a multidisciplinary team as a starting point for brainstorming possible services for individuals with CHARGE syndrome.
February 16 – Bethany Jung, MS RD CNSC CLC
Bethany is a Registered Dietitian, Certified Nutrition Support Clinician specializing in tube feedings and IV nutrition, and Certified Lactation Counselor, currently working in the NICU at St. Peter’s University Hospital in New Brunswick, NJ.
April 21 – Dr. Brittany Simpson, MD
Assistant Professor, Clinical Geneticist at Cincinnati Children’s Hospital Medical Center
January 19 – Brenda Bujold, Intervener
Brenda is a nationally certified Intervener, the first certified in Michigan, with an education and specialized training in deafblindness, and works one-on-one with a student with CHARGE who is deafblind.
Stay tuned for upcoming new topics…
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For additional recorded webinars on deaf-blindness, please visit the National Center on Deaf-Blindness.
CHARGE Syndrome Foundation Archived Webinars
Getting Real: Siblings Sharing Their Perspectives
(Webinar Recording)
Getting Real: Extended Family Sharing Their Journey
(Webinar Recording)
Getting Real: Parents Sharing their Journey through Elementary School
(Webinar Recording) (Closed Captions File)(PowerPoint File)
Getting Real: Parents Sharing their Journey through Upper Elementary School into High School
(Webinar Recording) (Closed Captions File)(PowerPoint File)
Structure At Home: Let’s Build It!
(Webinar Recording) (Closed Captions File)(PowerPoint File)
The Role of the Family in the IEP Process
(Webinar Recording) (Closed Captions File)
Lessons Learned: A Parent Panel 2020
(Webinar Recording) (Closed Captions File)
The Power of the Deaf-Blind Network: What’s in it for you?
(Webinar Recording) (Closed Captions File) (PowerPoint File)
Using Photos to Tell Your Child’s Story
(Webinar Recording) (Closed Captions File)(PowerPoint File)
Interpreter or Intervener: Which Will Meet the Educational Support Needs of Your Child?
(Webinar Recording) (Closed Captions File)
Laying the Foundation for Communication Exchange: Practical Strategies
(Webinar Recording) (Closed Captions File) (PowerPoint File)
Laying the Foundation for Communication Exchange: Critical Points of Understanding
(Webinar Recording) (Closed Captions File)
Impact of a Child with Complex Needs on the Family and the Importance of Self-Care
(Webinar Recording) (Closed Captions File) (PowerPoint File)
Lessons Learned – A Parent Panel
(Webinar Recording) (Closed Captions File)
Charting the Life Course
(Webinar Recording) (Closed Caption File) (Slide 48 – YouTube Link) (Slide 52 – YouTube Link)
Interveners – Part 1:
Who are they? Why are they critical for individuals with deafblindness?
(Webinar Recording) (Closed Captions File)
Interveners – Part 2:
What training is required and how can the need for Intervener services be determined?
(Webinar Recording) (Closed Captions File)
Interveners Part 3:
How can parents advocate for Intervener services for their children?
(Webinar Recording) (Closed Captions File)
Conference 101
(Webinar Recording) (Closed Captions File)
Ask The Expert: Q&A With David Brown
(Webinar Recording) (Closed Captions File) (PowerPoint File)
Strategies that Work in the Home and in the Community
(Webinar Recording) (Closed Captions File) (PowerPoint File)
Why Does My Child Do That? Compulsive Behaviors and OCD in CHARGE Syndrome
(Webinar Recording) (Closed Captions File)
CHD7 and CHARGE Syndrome Research: Unveiling the Mysteries
(Webinar Recording) (Closed Captions File)
Pain Issues in CHARGE
(Webinar Recording) (Closed Captions File)
The Forgotten Senses
(Webinar Recording) (Closed Captions File)
CHARGEing Into the Teens
(Webinar Recording) (Closed Captions File)
Techniques to Improve Feeding Skills and Speech Clarity
(Webinar Recording) (Closed Captions File)
Top Ten Strategies for Promoting Positive Behavior
(Webinar Recording) (Closed Captions File)
Physical Education for Children who are Deafblind
(Webinar Recording) (Closed Captions File)
A Conversation about Intellectual Assessment: What Parents Need to Know
(Webinar Recording) (Closed Captions File)
