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, telehealth has emerged as an incredible resource in the face of COVID-19. In this session, we hear from a caregiver about how telehealth has been an incredible resource for her and her child with a DEE and her entire family.

We also get to hear from three experts about how telehealth became rapidly available at the onset of COVID-19 and how it is at risk of disappearing if families don’t speak up. Learn how to take action!


Susan Herman, MD, is the director of the Epilepsy Program and a professor in the Department of Neurology at Barrow Neurological Institute and is a co-principal investigator of the Epilepsy Learning Healthcare System, a collaborative network of families, community members, clinicians, researchers, and healthcare leaders.

Neil Busis, MD, is a clinical professor in the Department of Neurology at NYU Grossman School of Medicine . He is also the Associate Chair, Technology and Innovation in the Department of Neurology and Clinical Director, Clinical Affairs, Telehealth Program at NYU Langone Health.

Jessica Nickrand, PhD, is the Manager of Programs at Child Neurology Foundation and is leading on the CNFs telehealth initiative. She previously worked at the American Academy of Neurology working with adult neurologists.

Kacie Craig is the mother of 4.5 year old Stella, who has SCN8A-related epilepsy and requires complex medical care.

JayEtta Hecker, Executive Director of Wishes for Elliott & DEE-P Connections, moderated this session. She came out of retirement to become one of Elliott’s (of Wishes for Elliott) biggest champions and advocates. All she learned during her 44 year career as an advocate for a range of sound, efficient, and sustainable public policies is now being applied to pushing forward advancement for pediatric rare epilepsies.

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