Video Archives

Rescue Medications for DEEs Series – Part 4

This webinar was originally broadcast live on August 12, 2020 and featured a review of the first 3 webinars in the Rescue Medications for DEEs series and a panel of…

Disfunción autónoma/disautonomía

Does your child suffer from digestive and/or urinary motility problems? Do they suffer from temperature regulation issues? Do they have irregular blood pressure and/or heart rate? When you have ruled…

Saving Our Telehealth for DEE Families

This is a recording of the webinar “Saving Our Telehealth,” which was held on July 20th, 2020. For families who have trouble leaving the house with their medically fragile children,…

Rescue Medications for DEEs Series – Part 3

This webinar was originally broadcast live on July 22, 2020 and featured a panel of caregivers sharing their experiences utilizing rescue medications for DEEs. This third webinar of the Rescue…

Rescue Medications for DEEs Series – Part 2

This webinar, which was originally broadcast live on July 8, 2020, gave a synopsis of recent in-depth interviews with DEE caregivers about their experiences utilizing rescue medications for DEEs and…

Vacunas COVID-19 y epilepsia: enfoque en la población DEE

In conjunction with NIH and our partners at the PCDH19 Alliance, we held this webinar to update DEE families on COVID-19 vaccines and epilepsy. This included updates on the development…

Rescue Medications for DEEs Series – Part 1

This webinar was originally broadcast live on June 12, 2020. We heard from a caregiver about her experience navigating and using rescue medications for DEEs and from two leading professionals…

Promoting Healthy Relationships between Those with Severe Epilepsy and Their Siblings

Have you struggled with how to manage the relationships between your medically complex children and their more typically developing siblings? Are you a sibling to someone with severe epilepsy and…

Mejora de la calidad de la atención en la epilepsia infantil poco común

This quality of care webinar was moderated by Gabrielle Conecker, mother to Elliott who has SCN8A-related epilepsy and severe DEE, and is Co-Founder of Wishes for Elliott and DEE-P Connections.…

Estrategias para aprender en casa con su hijo DEE e involucrar a toda la familia

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…