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  • 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…

  • 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 it could mean for your child’s care, and—most importantly—how you can make your voice heard. Hear from two seasoned advocates:Laura Weidner, Chief Advocacy and Government…

  • 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 the goals of care for their child. Join a panel of experienced parents as they share valuable insights into their decision-making journeys. Discover the factors…

  • 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…

    Free

  • Surviving 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…

  • Pulmonary Decision-Making: Navigating Respiratory Care for Medically Complex Children

    📅 February 5, 2026🕛 12:00 PM CT | 1:00 PM ET | 10:00 AM PT💻 Live on Zoom Pulmonary care decisions can be some of the most complex and emotionally heavy choices families face. In this webinar, we bring together clinical expertise and lived experience to support caregivers navigating respiratory care for medically complex children. Pediatric…

  • چت DEE-P

    Join Shannon and Anne for our next DEE-P Chat — a relaxed, connection-centered space for caregivers of children impacted by Developmental and Epileptic Encephalopathies (DEEs). This month, we’re keeping it simple. There is no formal topic. Instead, we’ll spend time getting to know one another through brief introductions, sharing about our children, and reflecting on…

  • An Evening with Inchstone

    As new treatments move closer to reality, we need better tools to measure meaningful change in our children’s development. Join DEE-P Connections and The Inchstone Project to learn about Parents Speak 2 — a caregiver-powered survey helping improve outcome measures. Your voice is essential to advancing clinical trial readiness.