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.

Rare Parent Relationships

In this presentation, Leah Lewis, MA, LMFT walks us through how to best support our relationships as a rare parent. Topics of discussion will include:

  • supporting each other through stressful/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

Caregiver Mental Health

Parenting any child comes with challenges. Parenting a child with a rare disease can often feel overwhelming. With the challenges of daily living, a schedule full of appointments and the cost of health care, caregivers can struggle with anxiety, fatigue and burnout.

This session led by Crystal Polk, LISW-CP, to learn strategies for reducing stress and anxiety, asking for support and more! During the meeting, Crystal offered these resources to counter the mental health risks of caregiving for a child with a rare disease.