همه نوشتههای Shannon Guardiola
Parent 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…
ادامه مطلبStronger 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…
ادامه مطلبWhat’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…
ادامه مطلبReal 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…
ادامه مطلبRelationships 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…
ادامه مطلبThe 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…
ادامه مطلبGrowing 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…
ادامه مطلبALL 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.…
ادامه مطلبOur CVI Journey
Anne Thompson Heller shares her daughter’s journey with CVI
ادامه مطلبHow to Get Grants and Funding for Medical Expenses
DEE-P Connections, in association with DYNC1H1 Association, was excited to welcome Advocacy Abby, who assists families with medically complex children in navigating the complexities of grants and other funding sources.…
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