Posts by Shannon Guardiola
DEEP Submits Formal Comments Opposing OMB Proposal That Threatens Progress in Rare Epilepsy Research
DEEP submitted formal comments to the Office of Management and Budget (OMB) in response to its proposed revisions to federal financial assistance rules (Docket OMB‑2026‑0034). These changes, if implemented, would…
Read MoreFDA Guidance To Accelerate Individualized Therapies for Ultra-rare Diseases
The FDA recently proposed guidance that will help establish a “Plausible Mechanism Framework” for individualized therapies for those with specific genetic, cellular, and molecular abnormalities.The framework seeks to facilitate faster…
Read MoreUnderstanding ASOs & Informed Consent
Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the…
Read MoreSeizure 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…
Read MoreDignity in Design: Why Universal Changing Stations Cannot Wait
Are you tired of changing your loved one in the trunks of cars, on bathroom floors, or just skipping outings altogether? We are too. As a nanny and caregiver to…
Read MoreNavigating 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…
Read MoreUnderstanding Quality of Life in Developmental and Epileptic Encephalopathy
Study Overview This study examined what factors most strongly influence quality of life for 242 individuals (ages 2-50 years) with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental conditions.…
Read MoreCaring 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…
Read MoreNavigating GI Interventions: From Testing to Treatment
In this recorded webinar, pediatric gastroenterologist Dr. Sherief Mansi discusses gastrointestinal (GI) challenges in medically complex children, including feeding and stooling issues, common testing, and care options such as tube…
Read MoreLightening 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,…
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