Episode
Tortured Hope: What is it like growing up at risk for Huntington’s Disease?
- Podcast
- All Access DNA
- Published
- Apr 7, 2026
- Duration seconds
- 2480
- Processing state
not_requested- Canonical source
- https://allaccessdna.podbean.com/e/huntington_memoir_neuro/
Actions
POST https://stenobird.com/v1/public/podcasts/all-access-dna-7139504/episodes/tortured-hope-what-is-it-like-growing-up-at-risk-for-huntington-s-disease/transcription-requests
Idempotently request low-priority transcript generation for this episode.GET https://stenobird.com/podcast/all-access-dna-7139504/tortured-hope-what-is-it-like-growing-up-at-risk-for-huntington-s-disease.md
Read the agent-friendly Markdown representation of this episode resource.
Summary
Lori Jones shares her personal journey with Huntington's disease, exploring its symptoms, family impact, and the importance of community and research. Lori shares with us insights into living with risk, making decisions about testing, and advocating for better understanding and treatment. Keywords: Huntington's disease, genetics, neurodegenerative, family impact, genetic testing, community support, research, memoir, advocacy Key Topics: Genetic inheritance and risk of Huntington's disease Family impact and personal stories of living with HD The importance of community, support, and advocacy in HD Current research, clinical trials, and future hope for HD treatments Guest Bio: Lori Jones has personally experienced the effects of Huntington’s Disease (HD) in her family and was instrumental in starting a Team Hope annual event in her area to raise awareness and support for research and community programs. She has been published in the Wisconsin HDSA Update Newsletter, and spoken in the public schools about HD, genetics, and presymptomatic testing. She has contributed short stories for Women in High Def by Diane Markins. A storyteller at heart, she regularly writes and speaks about her experiences with HD and many other topics to groups of all ages. Lori has three adult children and lives with her husband Chris in Wisconsin, when they aren’t escaping north to the Upper Peninsula of Michigan. “Spared: A Memoir of Risk and Resolve” is her first book. Resources: Lori Jones’ Website Spared: A Memoir of Risk and Resolve Help 4 HD International International Huntington Association Huntington’s Disease Society of America Information on uniQure Take Our Listener Survey and Direct Future Episodes! https://tinyurl.com/mr3kcm6b Please subscribe to this podcast on Apple Podcasts, Spoti…