Family
Managing the Journey with your Complex Child
In this conversation, you will meet Blyth Lord – mom to Cameron who had a genetic disorder and passed away at the age of 2. She is the Founder of…
Read MorePreventing Caregiver Burnout: A Workshop on Building Resilience
This workshop on on Building Resilience and Preventing Caregiver Burnout was held with an amazing mother daughter duo – STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
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 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…
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