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DEE-P spjall
In this safe and supportive space, you’ll connect with others who understand the unique challenges of raising a child with a severe rare epilepsies (aka DEEs). Whether you're navigating hospital…
Making sure every inchstone of progress is measured – Update on The Inchstone Project
Join us for an update on The Inchstone Project which is working to make sure that there are assessments to measure the inchstones, not milestones, of progress our loved ones…
Growing Together: Navigating the Life Stage Checklist for Families
Join us for an empowering and informative webinar, Growing Together: Navigating the Life Stage Checklist for Families. This session is designed to support parents and caregivers as they navigate the…
The Life-Saving Nature of Epilepsy Surgery
Epilepsy surgery is not a last option and you will hear why as during this session we update you on emerging research around the efficacy and utility of surgical interventions…
Relationships 101 – Marriage & Parenting a Medically Complex Child
Join us, as Amanda Griffith-Atkins (Licensed Marriage & Family Therapist and PWS Mom) unpacks the realities of working on your marriage while parenting a child with disabilities and medical complexities.…
Real Moms, Real Stories: Advocacy That Inspires
Join us, for an inspiring and down-to-earth conversation with six incredible moms who are walking the path of advocacy for their disabled children. They’ll share personal stories—real, raw, and powerful—about…
DEE-P Chat: Relationships 101 Follow-up
Join us, for a follow up with your partner for a “DEE-P Chat” with other couples to feel seen and heard. Amanda and Anne will be in attendance to answer…
What’s at Stake for Medicaid—and How Parents Can Take Action
Proposed changes to Medicaid could have serious consequences for families of children with medical complexity and disabilities. Join us for a timely and important conversation about what’s being proposed, what…
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…
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. Join Jennifer Bloom, parent, caregiver, and advocate, for a practical and encouraging session on how AI tools can help lighten the mental load. Jennifer will share real examples of how she uses AI to…
FreeSurviving The Holidays – A DEE-P Chat
Join us Monday November 17 at 8pm EST as we chat about navigating the holidays with our medically complex kids. We will be sharing gift ideas, how to create memories, joining family/friends for gatherings, and navigating all the big feelings this season brings!
Navigating GI Interventions: From Testing to Treatment
Join us on December 12 at 3pm CT for a family-centered webinar on GI health in medically complex children. Pediatric gastroenterologist Dr. Sherief Mansi will review feeding and stooling challenges, common testing, and clinical options such as tube feeding, stomas, and TPN. Two parents with lived experience will also share practical insights from their own journeys. This session is…
