Family Education Series
The KARES Virtual Family Education Series provides KDM5C families and caregivers valuable resources to navigate the challenges of living with a rare genetic condition. We schedule events on topics that come highly requested by KDM5C families!
In these events, our families hear from experts in communication, behavior, mental health, guardianship, toilet training, and more. You can find upcoming events on the KDM5C Family Support Group.
Find videos of our prior Family Education Sessions below. If you would like to request a Family Education topic, please contact us.
Navigating the Transition to Adulthood
Watch this session with Amanda Moore of the Angelman Syndrome Foundation that presents their Transition of Care Toolkit and other resources to be aware of as you're planning for your KDM5C or disabled child's future. Find resources at: angelman.org/asgrowsup
Rare Parent Relationships
In this presentation, Leah Lewis, MA, LMFT walks us through how to best support our relationships as a rare parent, including:
supporting each other through trying times
communication techniques
calming strategies
validating each other's feelings
and more!
Communication and AAC
In this presentation, Caitlin Burke, M.S., CCC-SLP walks you through how to best support your AAC User from a neurodiversity-affirming lens. The information in this presentation has come from leading experts in the field of AAC, including AAC Users themselves. After this presentation, you will walk away with a deeper understanding of...
what AAC is
how to use a multimodal communication framework
the power imbalance between speaking and nonspeaking individuals
the AAC myths that still persist today
best practices for supporting AAC Users