Strategies for Learning at Home with your DEE Child and Engaging the Whole Family

This is a recording of the DEE-P Connections webinar from May 13, 2020 “Strategies for Fun and Learning at Home for Kids with DEEs and the Whole Family” which explored strategies to integrate therapy into your everyday family lives, managing expectations, regression and having fun with your kids during the COVID-19 pandemic. The webinar was planned in coordination with all panelists.

The webinar was moderated by Gabrielle Conecker – mother to Elliott, who has SCN8A-related epilepsy and President and Co-Founder of Wishes for Elliott and DEE-P Connections.

Our panelists included:

Jenny Downs, Head, Child Disability Health and Wellbeing at Telethon Kids Institute at Perth Children’s Hospital who has a passion for research and works tirelessly to improve the lives of children with disabilities and their families

Pamela Diener, Professor Georgetown University School of Medicine, Developmental Neuroscientist, Pediatric Occupational Therapist focused on children who are medically complex and Sister to Jolie, who lives with Rett Syndrome

Amanda Jaksha, mom to Ava who has CDKL5 Deficiency Disorder and Treasurer at International Foundation for CDKL5 Research & Colorado Rare

Luke Rosen, founded KIF1A.ORG in 2016 with his wife, Sally following their daughter Susannah’s KIF1A diagnosis to aggressively accelerate discovery of treatment for Susannah and children like her

For more DEE resources, check out our resource center

Privacy Statement

We recognize that your privacy is important. Our privacy statement outlines the types of personal information we receive and collect when you use this website, as well as some of the steps we take to safeguard information. Please read more here.