Eddie
Day
Parent Champion
Courageous Parents Network
Eddie currently resides in Nashville, TN with his wife Jennifer and bonus daughter Abby. In July of 2023, Eddie and Jennifer lost their daughter, Anna Violet, at 4 years old to Peroxisomal Biogenesis Disorder (Zellweger Syndrome). Since Anna was born, Eddie has been active in the world of advocacy, joining organizations such as NORD and The Global Foundation for Peroxisomal Disorders (The GFPD) to increase awareness of and funding for research, family outreach and support for those in the rare disease community. Eddie has now joined Courageous Parents Network as a Parent Champion.
Presenting at the Nexus Summit:
Children and families affected by serious medical conditions face considerable challenges in navigating the medical and psychosocial aspects of complex chronic illness management. They experience anticipatory grief, isolation, a loss of agency and control, a fear of being misunderstood by their child’s medical team, the burden of decision-making and a fear of decisional regret, all while seeking to be a ‘good parent’ to their child. Palliative medicine principles including an emphasis on serious illness communication and clarification of family values have significant positive impacts on…