About Yentli

Yentli’s Journey

My name is Yentli Soto Albrecht. I am getting my MD-PhD to be a scientist and a doctor at the University of Pennsylvania, a C9orf72 genetic carrier, and the co-founder of CureC9. My grandmother died of C9 FTD at 69. My aunt died of C9 ALS at 59. My father died of C9 ALS at 66, fourteen months after his first symptom. I carry the same C9 expansion. My odds of being diagnosed with ALS or FTD are roughly 50% by 55 and 95% by 65.

When my father was diagnosed with ALS, I was almost finished my PhD that focused on how mitochondria control viral replication. His diagnosis motivated me to redirect everything I had toward the disease that would come for me. I finished my PhD, then within a year, I built eleven collaborative research projects across eight countries, secured $150,000 in competitive research funding, and assembled an eight-member Scientific Advisory Board of leading ALS and FTD scientists. Not because I am exceptional — because I am out of time. As an MD-PhD trainee, I had the tools and the language that many asymptomatic carriers, patients, and families do not. So, I am not waiting for someone else to connect the dots. 

Many doctors and scientists around the world are doing pioneering work centered on C9, my genetic mutation. However, the data are scattered across institutions, the research is siloed by discipline, and the people who carry this gene are studied but rarely consulted. As a scientist, a neurologist-in-training, and a patient, I am working to bridge these gaps because our community needs it. 

My father used to say: ‘As long as you’re breathing, you can still make changes.’ I intend to do exactly that, and I would love if you would join me.

I completed my PhD in Cell and Molecular Biology at the University of Pennsylvania in 2024, and am now one year away from finishing my MD. I plan to train in  neurology so that I can care for presymptomatic carriers predisposed to ALS and FTD, the population I belong to.