Carrying an ALS Gene: Mindy Uhrlaub’s Story of Hope & Action
Facing the same genetic mutation that led to her Mother's battle with ALS, Mindy shares her emotional journey of testing, uncertainty, and turning fear into advocacy.
What happens when you learn that your DNA carries the same mutation that led to a loved one’s battle with ALS? In this episode, I sit down with Mindy Uhrlaub, who discovered she is a carrier of the C9orf72 gene—the most common genetic cause of ALS and Frontotemporal Dementia. Mindy shares her emotional journey of genetic testing, the weight of living in the unknown, and the unique challenges that come with being pre-symptomatic.
We dive into the mental and emotional impact of her hereditary disease, the stigma surrounding genetic conditions, and how humor, advocacy, and community can help navigate these uncertainties. Mindy also talks about her work with End the Legacy, a patient led organization dedicated to the needs and interests of the Genetic ALS & FTD community.
This powerful conversation is a reminder that while genetics may shape our path, they don’t define who we are. Tune in for an honest, hopeful discussion about fear, resilience and finding purpose in the face of the unknown. Listen in and share with a friend.
Hugs, Lorri
