Episode
Lived Experience Facing Genetic Diagnosis with Mindy Uhrlaub
- Published
- Jun 4, 2026
- Duration seconds
- 2641
- Processing state
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- https://www.imperfectadulting.com
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Summary
If you love the show and you'd like to support it directly you can tip the host here https://imperfect-adulting.captivate.fm/support In this episode of The Art of Imperfect Adulting, Amy Stone speaks with Mindy Uhrlaub about living with the shadow of ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease. Based in Marin County, California, Mindy shares her family legacy of ALS, navigating life as a genetic carrier, and the complexities of caregiving for multiple family members while raising children. This deeply personal conversation explores not just illness and loss, but resilience, advocacy, and the evolution from creative professional to patient rights activist. Listeners will learn about genetic ALS, the realities of the Sandwich Generation, and how storytelling shapes healing and community. About Mindy Uhrlaub: Mindy Uhrlaub is a carrier of the fatal C9orf7 genetic mutation. She participates in twenty longitudinal studies of ALS and has testified before the FDA and the NIH about medical rights of genetic carriers. Mindy was nominated onto a committee at the National Academy of Science to write the 2024 report, Living with ALS. Her latest book, Last Nerve: A Memoir of Illness and the Endurance of Family, won the 2025 Nonfiction Book Award. For her ALS advocacy, Uhrlaub also received awards from the Les Turner ALS Foundation, ALS TDI, and the ALS Network. Main Topics Covered: The reality of growing up in a family with ALS: genetic risk, diagnosis, and evolving medical understanding. Mindy’s experience as both a caregiver for her husband (twice diagnosed with lymphoma) and her mother (diagnosed with ALS). What it means to be part of the Sandwich Generation—balancing care for children and aging parents, and why it’s different today than for previous…