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.
Amy Wood and Eugenie Hsu, Raymond A. Wood Foundation
Amy Wood joins Dr. DIY podcast host Eugenie Hsu in conversation about the upcoming Pituitary Brain Tumor Virtual Family Conference coming up on November 14 & 15. Register for the conference: www.pbtconference.org. Listen and learn about this exciting conference as well as about Eugenie’s backstory about how she successfully treated her son’s hypothalamic obesity using oxytocin and naltrexone (6:00 to 27:50)
24 Aug 2020
Anthony Di Franco: Biohacker, Open Insulin Project
Anthony DI Franco is a type 1 diabetic who decided to tackle big Pharma’s monopolistic practices and rising costs of insulin by founding the Open Insulin Project. Listen and learn about how he was inspired to apply an anarchistic and biohacker approach to contribute to the emerging and cutting edge field of open source medicine. To learn more about the Open Insulin Project, see their website: https://openinsulin.org/
26 Jun 2020
Penelope Heller, Cancer Survivor and Patient Advocate
Penelope Heller is a 23-year-old young woman from New York City who was diagnosed with osteosarcoma in her sternum and ribs at 17. When she found the chronic pain in the aftermath of the tumor resection intolerable— she used her research and advocacy skills to find and import a medical device, get it approved by the FDA and the hospital institutional review board, get it covered by insurance, find a surgeon, and get it customized and surgically implanted in her body— this was all accomplished by her own initiative and before she was old enough to buy alcohol in her state! Listen to Penelope describe how she leveraged her desperation to pull off these patient advocacy feats.
30 May 2020
Maria Picone, CEO of TREND Community
Maria Picone is a patient advocate and co-founder and CEO of TREND Community, a digital health company whose mission is to improve the quality of life for all who live with rare and chronic disease: WWW.TREND.Community
TREND uses technology to leverage social media to better understand disease burden and accelerates the discovery and delivery of new treatments. Join me in conversation with Maria to learn about how her own personal rare-disease journey prompted her use of social media crowdsourcing and how these experiences inspired her to start TREND. You will learn about how TREND helps rare and chronic disease communities by gleaning the valuable information found in social media group conversations of patients and their caregivers .
15 May 2020
Julianne Baker, mom and neuroscience medical sleuth
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
14 May 2020
Amy Wood, DIY brain tumor parent-advocate and founder of the Raymond A. Wood Foundation
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
8 May 2020
Interview of Saniona CEO, Rami Levin, about the results of the phase 2 trial of Tesomet.
New Hope for HO: Tesomet is a new drug being trialed for Prader-Willi syndrome and Hypothalamic Obesity. Rami Levin describes the successful phase 2 trial results.
5 May 2020
Pilot Dr. DIY
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.
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