The Genetics of Hope: Recent Episodes
Artemis Joukwosky, Cray Novick, Gareth Burghes
Candid conversations with leading doctors, patients, researchers, and families in rare disease communities.
Nikki McIntosh, the founder of Rare Mamas, believes there is a brave fighter inside every rare-disease mother. By sharing her learnings, tips, and resources, Nikki wants to empower other rare disease parents to shift from distress to prowess. In this conversation, we speak with Nikki about the path to diagnosis, family dynamics, parenting, and getting comfortable with not being comfortable. Also on the episode are Genetics of Hope co-directors Artemis Joukowky, Gareth Burghes, and Cray Novick.
In this episode we speak with Dr. Kathryn Swoboda, a neurologist at Massachusett's General Hospital specializing in Spinal Muscular Atrophy is in conversation with co-host Artemis Joukowsky her patient of over 20 years. Today's show focuses on SMA, a rare neuromuscular disease. We track a twenty-year journey leading to three breakthrough treatments. We talk about balancing the cost of treatment with the value of human life, what impact can newborn screening have on the treatment of a disease, and how can research for one disease affect research in other diseases.
From True Spectrum Media this is the Genetics of Hope podcast, a candid conversation series with the doctors, patients, researchers, families and activists who make up this Rare Disease and Biotech community of goodness. This is your host Cray Novick, and Co-host Artemis Joukowsky. We started a storytelling journey looking at how breakthrough medicines are made, from grassroots conferences, to lab benches, and FDA approvals. This is a podcast by and for the rare disease community. What is your Genetics of Hope?