This podcast features stories of patients and caregivers who serve as health advocates for themselves, family members or their rare disease community; conduct “citizen-scientist” literature reviews and research; and work (with or without research and clinical scientists) to discover their own treatment interventions for the difficult-to-treat conditions that often stump the medical establishment.
Dr. DIY host Eugenie Hsu is a clinical psychologist and citizen scientist, who has been a patient advocate on behalf of her son and believes in working to advance science for optimal quality-of-life.
Where to listen
Interview of Saniona CEO, Rami Levin, about the results of the phase 2 trial of Tesomet.
Julianne Baker has been researching her son’s mysterious medical condition for over 20 years and has recently found some answers. Listen to the story about her medical detective work on her son and learn about the connections she has made between suicidal tendencies, sleep, hunger, hormones, and a curious autistic trait. For PDA info, see https://www.autism.org.uk/about/what-is/pda.aspx. For info on Dr. Theoharides’ work, see https://www.ncbi.nlm.nih.gov/pubmed/21193035
Join me in conversation with Amy Wood, parent advocate for her son (diagnosed with Craniopharyngioma in 2015) and founder of the Raymond A. Wood Foundation. She discusses the reasons for founding her organization, the passion behind her work in the brain tumor community and the accomplishments and prospective plans for the foundation. Www.rawoodfoundation.org
Trailer episode of Dr. DIY, a podcast that interviews guests who have something to share about being forward- thinking citizen scientists or health advocates for rare diseases and other health conditions not well understood or treated by the medical establishment.