Transistor (https://transistor.fm) https://feeds.transistor.fm/the-genetics-of-hope Candid conversations with leading doctors, patients, researchers, and families in rare disease communities. 2020 True Spectrum Media, LLC d88c606f-eead-5e16-b005-f91f52f17852 no Introducing The Genetics of Hope Podcast en Wed, 23 Jul 2025 07:34:22 -0700 Tue, 02 Dec 2025 13:58:29 -0800 http://geneticsofhope.com https://img.transistor.fm/LUPOV1NTEu7NooZA2CTXkUe4izzWekjgynGdOQGNK_A/rs:fill:0:0:1/w:1400/h:1400/q:60/mb:500000/aHR0cHM6Ly9pbWct/dXBsb2FkLXByb2R1/Y3Rpb24udHJhbnNp/c3Rvci5mbS9zaG93/LzE2MTg0LzE2MDUy/Mjc3MzQtYXJ0d29y/ay5qcGc.jpg http://geneticsofhope.com episodic Artemis Joukwosky, Cray Novick, Gareth Burghes Candid conversations with leading doctors, patients, researchers, and families in rare disease communities. Candid conversations with leading doctors, patients, researchers, and families in rare disease communities. DNA, rare disease True Spectrum Media No No 3 3 Parenting a Rare Disease Child with Rare Mamas Founder Nikki McIntosh full f2f3168b-c1a7-4398-90e8-6aa023f5e382 https://share.transistor.fm/s/ab266d84 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. 

]]> 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. 

]]> Tue, 02 Feb 2021 13:30:57 -0800 Artemis Joukwosky, Cray Novick, Gareth Burghes Artemis Joukwosky, Cray Novick, Gareth Burghes 2211 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. 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. DNA, rare disease No 2 2 Radical Optimism in Rare Disease with Dr. Kathryn Swoboda full 955aeb4f-dcb6-4100-b458-a1792fe3a212 https://share.transistor.fm/s/a37b1534 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.

]]> 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.

]]> Mon, 14 Dec 2020 11:53:18 -0800 Artemis Joukwosky, Cray Novick, Gareth Burghes Artemis Joukwosky, Cray Novick, Gareth Burghes 3811 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. 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. DNA, rare disease No 1 1 Introducing The Genetics of Hope Podcast trailer 622f2176-fa20-49dd-9c65-998b1e23206f https://share.transistor.fm/s/34c1f502 Thu, 12 Nov 2020 21:42:26 -0800 Artemis Joukwosky, Cray Novick, Gareth Burghes Artemis Joukwosky, Cray Novick, Gareth Burghes 139 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? 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 DNA, rare disease No