EP 246: Turning a fatal diagnosis into a cure strategy with Yentli Soto Albrecht of CureC9
I don’t care who cures ALS/FTD, I just want it to happen as efficiently and fast as possible.
🎙️ Yentli Soto Albrecht, PhD joined The Genetics Podcast last week, and the conversation is worth your time.
She is an MD-PhD trainee at the University of Pennsylvania, a C9orf72 carrier, and co-founder of CureC9. She lost her father to C9 ALS in August 2024. The episode covers how she is channeling that into building the infrastructure the field needs to move faster: a biorepository adding 12 new patient-derived cell lines a year, a $12 million fundraise targeting the CNS gene therapy delivery problem, and advocacy for the portion of the C9 population that gets left out of trials entirely.
That last point is one of the sharpest in the episode. C9orf72 carriers can develop ALS, FTD, or both. Without validated biomarkers for FTD progression, there are no trial endpoints, and without endpoints, there are no trials.