Penn Medical Student with Rare Genetic ALS Fights for Life-Saving Gene Therapy

Yentli Soto Albrecht is racing against time to develop a cure for the fatal disease that killed her father.

Published on Mar. 9, 2026

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Yentli Soto Albrecht, a 32-year-old medical student at the University of Pennsylvania, is battling a rare genetic form of ALS (Lou Gehrig's disease) that also claimed the life of her 42-year-old father in 2024. Determined to turn ALS into a survivable diagnosis, Soto Albrecht is working alongside ALS researcher Dr. Defne Amado in the lab, focusing their efforts on developing a gene therapy that could one day save lives.

Why it matters

ALS is a devastating and fatal neurodegenerative disease with limited treatment options. Soto Albrecht's personal connection to the disease, as well as her position as a medical student and researcher, gives her a unique perspective and drive to find a cure. Her work could have far-reaching implications for the ALS community and provide hope for those facing this debilitating illness.

The details

Soto Albrecht was devastated to learn that she has the same genetic form of ALS that killed her father. Now, as an MD/PhD student at the Perelman School of Medicine, she is racing against time in the research lab, determined to develop a gene therapy that could save her own life and those of others with ALS. Soto Albrecht and Dr. Amado, an ALS researcher at Penn who also treated her father, are collaborating on this critical research, which focuses on targeting the motor neurons affected by the disease.

  • In 2024, Soto Albrecht's father passed away from ALS at the age of 42.
  • Soto Albrecht is currently a 32-year-old medical student at the University of Pennsylvania.

The players

Yentli Soto Albrecht

A 32-year-old medical student at the University of Pennsylvania who has a rare genetic form of ALS, the same disease that killed her father in 2024.

Dr. Defne Amado

An ALS researcher at the University of Pennsylvania who also treated Soto Albrecht's father and is now collaborating with her on developing a gene therapy for ALS.

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What they’re saying

“I'm not sure I'll survive this, but everything I do is toward that goal.”

— Yentli Soto Albrecht, Medical Student (CBS News)

“It's a really tough disease.”

— Dr. Defne Amado, ALS Researcher (CBS News)

“She is just really determined to put a dent in this disease, and we share that determination.”

— Dr. Defne Amado, ALS Researcher (CBS News)

What’s next

On April 8, there will be a push-up challenge to raise funds for ALS research.

The takeaway

Soto Albrecht's personal battle with a rare genetic form of ALS has fueled her determination to find a cure, and her work alongside Dr. Amado in the research lab could lead to life-saving breakthroughs for those affected by this devastating disease.