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CHARGE Syndrome Foundation Webinars are provided with support from the National Center on Deaf-Blindness. If you have a suggestion for a future webinar topic, please send it to info@chargesyndrome.org.


2019-2020 Webinar Wednesday Series

Nov 13 – Interpreter or Intervener: Which Will Meet the Educational Support Needs of Your Child? 8:00 p.m. – 9:30 p.m. EST

Presented by: Susanne Morgan Morrow – Director
New York Deaf-Blind Collaborative

Beth Kennedy – Director
DeafBlind Central: Michigan’s Training & Resource Project and the DeafBlind Intervener Training Program at Central Michigan University

An educational interpreter and intervener have overlapping roles in the classroom, which may cause confusion for parents of children with CHARGE syndrome, thus leading to challenges when advocating for the supports for school. This presentation will explore the differences and the similarities in the roles and assist families in identifying which one is the best fit for their child’s needs. An overview of each role will be provided, including examples of how interpreters and interveners work with students who are deafblind in K-12 settings.

Participants will:

  1. Identify the differences and similarities between an educational interpreter and an intervener.
  2. Identify the principles behind the roles of an educational interpreter and intervener.
  3. Apply these concepts to the support needs of their child.

December 4 – Using Photos to Tell your Child’s Story – 8:00 p.m.- 9:30 p.m. EST

Presented by: Donna Carpenter  – Kentucky DeafBlind Project

 Come learn how using 20 photos to tell your child’s story to his/her educational team can provide valuable perspective of your child as part of a family.  Your short digital video will provide the educational team information about strengths, preferences, who your child’s favorite person is, what pets are at home and family vacations.  Change your child’s educational team’s perspective from a “can’t do” to a “can do” mindset.

Jan 22 – The Power of the Deaf-Blind Network: What’s in it for you? – 8:00 p.m. – 9:30 p.m. EST

Presented by: Sam Morgan, Co-Director of the National Center on Deaf-Blindness (NCDB)

Join us to learn about the various levels of support available for your family and how you can get involved at the local, state and national levels.  You will learn about how the Deaf-Blind Network partners together to provide families high-quality services and support to families.

Feb 19 – Lessons Learned: A Parent Panel – 8:00 p.m. – 9:30 p.m. EST

Raising a child with CHARGE syndrome can sometimes feel overwhelming.  Please join us to hear the perspective of mothers as they share their lessons learned and what they know for sure. There will be time for Q&A at the end.

March 25 – The Role of the Family in the IEP Process – 8:00 p.m. – 9:30 p.m. EST

Presented by: Kristi Probst – Initiative Lead for Interveners and Qualified Personnel and Assessment, Planning and Instruction at the National Association on Deaf-Blindness

Navigating the IEP process can be very daunting, to say the least.  Join Kristi as she shares practical tips and strategies on how to ensure that the needs of your child and family are at the forefront of the educational programming for your child.  She’ll be joined by a few families of children with CHARGE syndrome who plan to share their real-life experiences and tips for effective partnership with their child’s educational team.

April 22- Let them Play: Getting Involved in your Community – 8:00 p.m. – 9:30 p.m. EST

Presented by: Matt LaCortiglia M.Ed.  and Maebh Barry MS Ed. 

Adapted Physical Education Teachers in the Deafblind program at the Perkins School for the Blind

During this webinar we will discuss considerations for assessing, selecting, and identifying potential recreational physical activities for individuals of all ages with CHARGE syndrome in community settings. Strategies for successful community experiences, planning considerations, and possible activity modifications will also be included.

Watch for registration information in your email inbox or sign up for eNews now. 


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: How can parents advocate for Intervener services for their children?
(Webinar Recording(Closed Captions File)

Interveners: What training is required and how can the need for Intervener services be determined?
(Webinar Recording(Closed Captions File)

Interveners: Who are they?  Why are they critical for individuals with deafblindness?
(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)

The Education of our Children: Helping Everyone Thrive with 3535
(Webinar Recording)
This webinar was provided with support from Perkins.

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)

A Conversation on Intellectual Assessment: What Parents Need to Know
(Webinar Recording) (Closed Captions File) (PowerPoint File)

Pain Issues in CHARGE
(Webinar Recording) (Closed Captions File)

The Forgotten Senses
(Webinar Recording) (Closed Captions File)

CHARGing 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)