Posts by Shannon Guardiola
Lightening the Load: How AI Can Support Families Managing Complex Care
Caring for a medically complex child means juggling endless details—from therapy notes and appointments to insurance paperwork and care coordination. In this recorded session, Jennifer Bloom, parent, caregiver, and advocate,…
Кененирээк окууParent Perspectives Insights Into Medical Decision-making
Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face for their child, weighing not only risks and benefits but also…
Кененирээк окууStronger Together: Reflections from the FamilieSCN2A Conference
Every story within our DEE community carries its own weight, wisdom, and wonder. This past August, our team had the privilege of attending the FamilieSCN2A conference in Denver to not…
Кененирээк окууWhat’s At Stake for Medicaid and How To Take Action
Proposed changes to Medicaid could have serious consequences for families of children with medical complexity and disabilities. This timely and important conversation about what’s being proposed, what it could mean…
Кененирээк окууReal Moms, Real Stories: Advocacy That Inspires
In this webinar we were joined by six incredible moms for an inspiring and down-to-earth conversation. They are all walking the path of advocacy for their disabled children. They shared…
Кененирээк окууRelationships 101: Marriage & Parenting a Medically Complex Child
During this webinar we were joined by Amanda Griffith-Atkins (Licensed Marriage & Family Therapist and PWS Mom) and Anne Thompson-Heller (Licensed Marriage & Family Therapist and mom to Jordan who…
Кененирээк окууThe Life-Saving Nature of Epilepsy Surgery
In this webinar, held in partnership with the Pediatric Epilepsy Surgery Alliance, we dive into why epilepsy surgery is not a last resort. We explore emerging research around the efficacy…
Кененирээк окууGrowing 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…
Кененирээк окууALL ABOUT The Connected Parent
We are joined by the founder of The Connected Parent, Julie Walters. Julie shares how her life lead her to investing her whole life savings into The Connected Parent platform.…
Кененирээк окууOur CVI Journey
Anne Thompson Heller shares her daughter’s journey with CVI
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