Posts by Shannon Guardiola
Blended Diets 101: Benefits, Basics & Getting Started
In collaboration with CDKL5 In Color Curious about using real food through a feeding tube? In this beginner-friendly webinar, pediatric dietitian Hilarie Geurink, RD, covers the basics of blenderized tube…
تېخىمۇ كۆپ ئوقۇڭDEEP 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…
تېخىمۇ كۆپ ئوقۇڭFDA 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…
تېخىمۇ كۆپ ئوقۇڭUnderstanding 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…
تېخىمۇ كۆپ ئوقۇڭSeizure 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…
تېخىمۇ كۆپ ئوقۇڭDignity 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…
تېخىمۇ كۆپ ئوقۇڭNavigating 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…
تېخىمۇ كۆپ ئوقۇڭUnderstanding 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.…
تېخىمۇ كۆپ ئوقۇڭCaring 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…
تېخىمۇ كۆپ ئوقۇڭNavigating 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…
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