Eventos
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…
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…
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…
Chat 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.
West Coast or Night Owl DEE-P Chat
Join Shannon and Colleen for our next DEE-P Chat — a relaxed, connection-centered space for caregivers of children impacted by DEEs. We’ll spend time getting to know one another through brief introductions, sharing about our children, and reflecting on our current highs and lows. Sometimes what we need most isn’t another presentation — it’s community.…
Seizure Clusters vs. Status: What Every Caregiver Needs to Know
When seizures escalate, knowing what you’re seeing and how to respond can make all the difference. In this webinar, we’ll break down the key differences between acute repetitive seizures (seizure clusters) and status epilepticus, two conditions that are often confused but may require different approaches to care. We’ll walk through how to recognize patterns, common…
Understanding ASOs & Informed Consent
Join DEEP and KCNT1 for an educational webinar exploring the fundamentals of ASO therapies and the critical role of informed consent in rare disease care. This session is designed for caregivers, clinicians, researchers, and advocates seeking a clearer understanding of how ASOs work, where they fit within today's treatment landscape, and how families can approach…
Blended Diets 101: Benefits, Basics & Getting Started
For many families of tube-fed children, feeding challenges can feel like an ongoing cycle of managing symptoms, adjusting formulas, and searching for solutions. Blenderized tube feeding offers another option that incorporates real food while supporting nutrition, family mealtimes, and quality of life. Join DEEP for an educational webinar with Hilarie Geurink, RD, a pediatric dietitian specializing…
