Uncategorized
Seizure Clusters Vs. Status: What Every Caregiver Needs To Know
What happens when seizures escalate? How do you know the difference between seizure clusters and status epilepticus, and why does it matter? In this educational webinar recording, we explore the…
ادامه مطلبNavigating Respiratory Care for Medically Complex Children
Pulmonary care decisions can be some of the most complex and emotionally heavy choices families face. In this recorded webinar, pediatric pulmonologist Esra Caylan, MD shares clinical insight into common respiratory challenges…
ادامه مطلبCaring Together: Families, Providers, and the Role of Palliative Support
Dr. Caylan from Cook Children’s Palliative Care joins a parent panel for an open, honest discussion about how pediatric palliative care supports medically complex children — and the families who…
ادامه مطلبLightening 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,…
ادامه مطلبParent 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 مطلبStrong Bipartisan Rejection by Senate Appropriations Subcommittee to Deep Cuts to NIH and Medical Research; Directs Focus on Pediatric Epilepsies
On July 31, the Senate Appropriations Subcommittee, by a 26-3 bipartisan vote, adopted the bill providing appropriations for many health research programs so critical to continuing progress towards better treatments…
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 مطلب