Going Public: “Watching Him Die of ALS the Same Way I Will”
“Watching him die of ALS the same way I will was the most painful thing I’ve ever experienced.”
In this post, Yentli Soto Albrecht, PhD went public for the first time with her identity as a C9orf72 genetic carrier — someone 95% likely to develop ALS and/or FTD in the coming decades. Having lost her father Frank Albrecht to familial ALS just months earlier, she shared what it meant to watch him die knowing that the same disease is likely coming for her. This was the moment she chose to stop being anonymous and began speaking openly as a patient-scientist and advocate.