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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

We are currently seeking experts in the field to participate in our Ask the Expert Series. If you are interested, please send an email to info@CHARGEsyndrome.org.

Click on past webinar titles to watch the recordings.

2024

June 4, 7:00 PM ET – Take CHARGE with Total Communication! 

Serie de “Pregùntale al Experto: Comunicación total con CHARGE [Español]

Presenters, Kathryn Bleczinski, Christine Cammisa, Neha Sharma, and Amber Skerry are Speech-Language Pathologists (SLPs) in the Deafblind Program at Perkins School for the Blind in Watertown, MA. They specialize in addressing the complex communication needs of students with CHARGE Syndrome, deafblindness, Autism Spectrum Disorder, and those with significant global challenges due to complex diagnoses. The SLP team is passionate about providing therapeutic services via a Total Communication approach to facilitate the development of receptive and expressive communication. They value an interdisciplinary approach to encourage generalization of skills across the school day, at home, and in the community.

Total Communication is an approach that uses a combination of verbal speech, sign language, symbols (e.g., photo/picture symbols, tactile symbols), meaningful use of whole objects, gestures, actions, facial expressions, communication devices, etc. This approach exposes students to multiple modalities to support both receptive and expressive language. A student may communicate using one or a combination of modalities, and we honor and shape all modes. During this presentation, we will discuss the benefits of using a Total Communication approach with our students who are diagnosed with CHARGE. We will discuss the possible ways communication can develop along with the strategies we have implemented to facilitate communication growth. Overall, we use creativity to individualize equipment and accommodations to optimize access to communication. We work together as an interdisciplinary team to implement each child’s educational program and incorporate a developmental approach. The development of language and communication through individualized instruction is paramount. Attendees will leave our presentation with the knowledge and tools necessary to support students with CHARGE and implement various communication strategies at home.

Resources:

Ask the Experts-Take CHARGE with Total Communication! Slides

Communication System Benefits and Drawbacks Chart

Finding the Right Communication System

Questions and Answers


The Ask the Expert Intervener Series will take place over three webinars this Spring. Each webinar will take place at 6:30 PM CT on the following dates, and will last for 1 hr and 15 minutes, 45 minutes of content followed by a question and answer session. (Click on each title to view):

Part One: April 16 – Deafblindness and its Impact on Learning: Key Resources for Families and Educational Teams

Does your IEP team understand what your child who is deafblind may need as a result of their combined vision and hearing impacts? Join us for this webinar where we will discuss an overview of deafblindness, its impact on learning, and share resources that will help you and your IEP team plan better educational programs for your child. Family perspectives will also be shared, for all to gain insight from their journey!

Part Two: April 30 – Educational Accommodations and Modifications: Improving Your Child’s Routines

A continued discussion around educational planning using resources presented in session one for children with deafblindness, including those children with more complex needs. Accommodations and modifications that can be included in your child’s daily routines and IEP will be shared. Family perspectives will also be shared, for all to gain insight from their journey!

Part Three: May 14 – The Nuts and Bolts of Interveners: What, Why, How, and When

What is an intervener? How is an intervener different from a paraeducator? How can an intervener or staff trained in deafblindness help support your child’s learning? Join us to learn about current services and supports across the country that can be considered when planning your child’s IEP. Key resources will be shared to increase your knowledge about interveners and their role in education now and in the future. Family perspectives will also be shared for all to gain insight from their journey!

Sessions will be lead by Dr. Kristi Probst, the Interveners and Qualified Personnel Initiative Lead for the National Center on Deafblindness. She is a National Leadership Consortium in Sensory Disabilities scholar. She holds licensures in Special Education for the Deaf & Hard of Hearing, Low Vision & Blindness, Learning Behavior Specialist, Elementary Education, and Early Childhood Education. Her undergraduate and graduate degrees focused on the education of students with sensory disabilities (deaf/hard of hearing and visual impairment), while her doctoral studies concentrated on the area of special education, specifically educating students who are deafblind. She has worked as a teacher both for students with sensory impairments and students with learning disabilities, Early Interventionist, Sign Language Interpreter, and university professor. Kristi uses her personal and professional experiences to inform her work, research, writing, and presentations. 

Download the IEP Discussion Guide prior to the start of the webinars.


14 de marzo del 2024, 7:00 PM hora del Este: Ask the Expert en español – Síndrome de CHARGE: Conociendo sus desafíos y oportunidades

Silvia Zapata, madre de un adulto con el síndrome de CHARGE compartirá su historia de cómo ha navegado el sistema de salud en Perú, a pesar de la poca información acerca del síndrome. Ella también compartirá como ha logrado convertir muchos desafíos en oportunidades para Piero.

Piero Franco Zapata es un adulto con el síndrome de CHARGE compartirá su experiencia creciendo, y desarrollándose con independencia. Piero ha iniciado muchas iniciativas para ayudar a otras familias en Latinoamérica.

March 14, 2024, 7:00 PM ET: Ask the Expert in Spanish – CHARGE Syndrome: Understanding its challenges and opportunities

Silvia Zapata, mother of an adult with CHARGE syndrome, will share her story of how she has navigated the health system in Peru, despite little information about the syndrome. She will also share how she has managed to turn many challenges into opportunities for Piero.

Piero Franco Zapata is an adult with CHARGE syndrome who will share his experience growing up and developing independently. Piero has started many initiatives to help other families in Latin America.

English interpretation will be provided.


January 30, 2024, 7PM ET – Ask the Expert: How CHARGE Syndrome Impacts Participation at School and Home

Handouts:

Presenters:

Alysha Croke, PT, DPT, PCS
Catherine Murphy, PT, DPT
Emily Weber, PT, DPT
Lauren Kling, PT, DPT
Michelle Sousa, PT, DPT

Alysha, Catherine, Emily, Lauren, and Michelle are physical therapists from Perkins School for the Blind in Massachusetts. Working in the Deafblind Program at Perkins, they have the pleasure of working with many individuals with CHARGE Syndrome. The PT team members love to design fun activities that are motivating for their students while encouraging the development of gross motor skills. They take a team approach that includes collaboration with the student, the family, and other providers to get the best outcomes for the students. Each physical therapist brings experience, passion, and knowledge to the field of deafblind physical therapy.

Past Webinars

2023

November 30, 7 pm ET – Ask the Expert: Physical Education, Sports, & Recreation for All

This presentation will highlight best practices related to physical education and sports, and resources for teachers, parents, and professionals. Attendees will walk away with a variety of resources that they can share with their multidisciplinary team.

Lauren J. Lieberman Ph.D. is a Distinguished Service Professor in the Kinesiology Department at The State University of New York at Brockport, (SUNY) in adapted physical education. She started her career teaching at The Perkins School for the Blind in the Deafblind program. She is co-director of The Institute on Movement Studies for Individuals with Visual Impairments or Deafblindness (IMSVI)( See www.brockport.edu/IMSVI) . She is the founder and director of Camp Abilities: An educational sports camp for children with visual impairments. Camp Abilities has been replicated in 20 states and eight countries. (www.campabilities.org and www.campabilitiesworld.com) She has published over 193 peer-reviewed articles and 21 books. She has delivered Keynote presentations and was an invited guest speaker all over the US and in over 15 countries. She won an Access Award from AFB for starting Camp Abilities. In 2017 she won a Points of Light Award for her work with Camp Abilities from the US Government. Camp Abilities has been featured on CNN, HBO Real Sports, and on NBC. In the Fall of 2019, she was awarded a Global Fulbright Scholarship to promote Camp Abilities world-wide. In 2022 she won a service award from the NY State AER.

September 27, 7 pm ET – Ask the Experts: Bridging the Gap between Home and School

This session will focus on how to adapt teaching materials and strategies used in the classroom to the home setting, including calendar/schedule systems and token economies.

Presenters: Sara Espanet and Rilla Hammett

Sara Espanet is a teacher at Perkins School for the Blind in the Deafblind Program. Sara started working at Perkins School for the Blind in 2008 as a teaching assistant. In 2015 she became a classroom teacher after receiving her Masters in Severe Special Education from Bridgewater State University. Sara works with students who are deafblind and multimodal learners. She has also worked with many individuals with CHARGE Syndrome and presented at the 2019 conference in Dallas, TX. Sara was a part of the Sandra Davenport Fellowship Program in 2015 and 2019. Sara has experience working with student’s families and collaborating with the whole team to ensure the success of each of her students.

Rilla Hammett is a teacher in the Deafblind Program at Perkins School for the Blind. Rilla started at Perkins as a Lesley University intern in 2016. Upon completing her undergraduate program a few months later, she was hired as a teaching assistant at Perkins where she worked for three years before becoming a classroom teacher in 2019. Rilla attended her first CHARGE conference in 2019 as a Sandra Davenport Fellow. In 2021 Rilla received her Master’s Degree in Severe Special Education from Lesley University. Over the past seven years at Perkins, Rilla has taught many students who have CHARGE Syndrome and have a large variety of learning and sensory needs. Rilla collaborates with families, related service providers, behavior specialists, and residential coordinators to find creative ways to ensure meaningful support is in place across the many settings that her students frequent.

August 30 – Ask The Experts Webinar: Adults with CHARGE

Join us for a webinar featuring a panel of adults with CHARGE who will share their experiences and expertise navigating educational, medical, post secondary, workplace, and social settings.

MEET THE PANEL

Bethany Boring

Bethany is a 41 year-old adult with CHARGE who dares to do more than just survive and wants to step out and thrive daily. She is a professional mental health coach working with Christian counselors and mental health professionals to launch support groups and community. She also oversees the Freedom and Care ministry at her church and is working on her public speaking opportunities spreading awareness about CHARGE. She is a mom to three amazing boys ages 10, 13 and 15. They live in Florida and love watching rocket launches from their driveway!

Symone Griffin

Symone is a 30 year old with CHARGE. She works as a pediatric nurse. She is a dog mom!

Katie Berkins

Katie is a 36 year old with CHARGE. She lives in Grand Rapids, Michigan. She has been working full time at West Michigan Shared Hospital Laundry for 16 years. She bought a home 6 years ago, where she lives with her 2 cats. She volunteers at the local zoo and helps in the kitchen at a Christ camping center camp. She loves to travel, hike, camp, kayak, do puzzles, and play board games.

June 28 – Ask the Expert: The Culture of CHARGE: Elevating Marginalized Voices

Presenters: Chelsea and Paul Winchester

In this session, you will learn about:

  • Barriers to receiving high quality care
  • How to use your voice to advocate for equity

Paul Winchester is a nationally recognized speaker and most recently was featured at the 2023 Early Hearing Detection & Intervention Conference in Cincinnati, Ohio. Paul’s educational experience includes a master’s degree in behavioral science from Minnesota State University at Mankato, emphasizing multicultural studies in 2020. In 2016 he obtained a Bachelor of Science degree in Communication with a minor in Philosophy from Minnesota State University at Mankato.
As the father of three children with special needs, he is passionate about assisting families and professionals to provide the necessary tools and resources to remove barriers from marginalized populations. In 2020 Paul and his wife Chelsea Winchester started a ministry called Enliven Ministries with the goal of addressing the needs of marginalized populations. Paul serves as both the Vice President, as well as the Director of Operations.
Chelsea Winchester is a wife and mother of 3 beautiful children with special needs. She is a Special Need Advocate and currently serves as the CHARGE Syndrome Foundation’s Family Liaison for the state of Minnesota. Chelsea also serves alongside her husband as the President and Executive Director of Enliven Ministries and takes great pride in homeschooling all 3 of her children.

May 30 – Ask the Expert – CHARGE Education and Development

David Brown has been teaching for 51 years, and as a Deafblind Educational Specialist he has been working with children with CHARGE syndrome since 1983.

In the United Kingdom he worked for the National Deafblind Association. He moved to California in 2000 to work with California Deafblind Services, based in San Francisco, and he continues to live there and work as a freelance consultant since his retirement 8 years ago.

He has given presentations about various aspects of CHARGE in 15 different countries, and in 32 states in the US. He is in demand as a conference speaker, and his articles about deafblindness have been translated into at least 14 different languages.

David has a credential in the Education of Students with Multi Sensory Impairments from the University of Birmingham in England, and an Honorary Doctorate of Science from Central Michigan University for his research work with children with deaf-blindness. In 2005 David was given the Star-in-CHARGE award by the CHARGE Syndrome Foundation, and in 2013 he was awarded the Deafblind International “Lifetime Achievement Award” for “innovative and visionary work with people with deafblindness.”

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…

Sign up for eNews now. 

For additional recorded webinars on deaf-blindness, please visit the National Center on Deaf-Blindness.

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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)