Posts by G C
Why Brain Tissue Donation Matters
This is the recording of the “Why Brain Tissue Donation Matters” DEE-P webinar which was recorded on June 24, 2022 The loss of any loved one with a rare epilepsy…
Read MoreGrowth Attenuation Therapy – Everything You Want and Need to Know
This is the recording of the DEE-P webinar which was recorded on May 18, 2022 In this incredible webinar, you will learn about growth attenuation from the caregiver, clinical, ethical,…
Read MoreHigh-tech Options for Alternative Communication and Access within the Home
“High-tech Options for Alternative Communication and Access within the Home” is the fifth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
Read MoreLow-Tech/No-Tech Communication Systems for Children with Complex Communication Needs
“Low-Tech/No-Tech Communication Systems for Children with Complex Communication Needs” is the fourth in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends at…
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 MoreAn Overview of Hypotonia and How it Impacts Overall Functioning and Development
“An Overview of Hypotonia and How it Impacts overall Functioning and Development” is the first in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with…
Read MorePediatric Hospice Support & Care
This is a recording of the webinar “Complex Continual Care for those with living DEEs and their families,” which was held on November 30th, 2021. Pediatric hospice support is not…
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 MoreRECORDING – ASSESSING STATUS AND OPPORTUNITIES
ASSESSING STATUS AND OPPORTUNITIES FOR DEVELOPING OUTCOME MEASURES FOR THE MOST SEVERELY AFFECTED POPULATIONS This is a recording of day one of the workshop, held November 4th 2021, and was…
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