Uncategorized
Growing Together: Navigating the Life Stage Checklist for Families
Aurdrey Vernick with Pediatric Epilepsy Surgery Alliance, walked participants through the Transition to Adulthood/Life Stage Checklist step-by-step, breaking down key milestones and actionable steps across critical life stages. From early intervention…
Read MoreWhy do I love DEE-P Connections?
Why do I love DEE-P Connections? I had never heard of a Developmental and Epileptic Encephalopathy (DEE) until we were told our daughter had one. She was just three months…
Read MoreCortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)
In this webinar, you will learn more about what Cortical Visual Impairment (CVI) is, what things looks like to someone with CVI and how to manage care and adapt for…
Read MoreUndiagnosed
This DEE-P Discussion was recorded on September 13, 2023. During this DEE-P Discussion, we explore the experience of having a child with an undiagnosed rare epilepsy disorder. We discuss different…
Read MoreRare Caregiving & Challenges with Self-Care – A DEE-P Discussion
This webinar was recorded on June 30th, 2023. Join us for this discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to…
Read MorePrograms to Help Care for Our Complex Kids – Inpatient and Outpatient
This webinar was recorded on June 7th, 2023. Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e.…
Read MoreGI Issues and Neurodevelopmental Disorders
This webinar was recorded on February 13th, 2023. In this webinar, hear about GI issues such as reflux, feeding tubes, constipation, and more! Speakers: Russ Zwiener, pediatric GI doctor and KdVS…
Read MoreUnraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone
“Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone” is the second in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
Read MoreAdaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays
“Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays” is the third in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our…
Read MoreRECORDING – Advance Outcome Measures for Severely Affected Populations
Building a Consortium to Advance Outcome Measures for Severely Affected Populations This is a recording of the second workshop, held November 11th 2021, focused on Building a Consortium to Advance…
Read More