Penn medical student with rare genetic form of ALS on mission to develop gene therapy

A medical student at the University of Pennsylvania is on a special mission in the research lab that could save her life.

Yentli Soto Albrecht's battle is against ALS, a fatal neurodegenerative disease. She has a rare genetic form of the disease.

It's a race against time in the research lab for Soto Albrecht, who is an MD/PHD student at the Perelman School of Medicine.

"I'm not sure I'll survive this, but everything I do is toward that goal," she said.

Genetic testing shows the 32-year-old has the same form of ALS — Lou Gehrig's disease — that killed her 42-year-old father in 2024.

"In that year, I was seeing my dad die of ALS the same way that I'm likely going to die," Soto Albrecht said. "And I felt like I had now a deadline as to how long I'd be able to live, and that felt really devastating in the moment."

ALS becomes paralyzing. Soto Albrecht's dad was in a wheelchair at her wedding. His form of ALS, which runs in the family, is also linked to a form of dementia called FTD.

"My hope is to turn the needle toward making ALS and FTD survivable diagnoses," Soto Albrecht said.

Currently, there are no cures and limited treatments.

For Soto Albrecht, the future depends on research.

Big help is coming from Dr. Defne Amado, an ALS researcher at Penn, who also treated Soto Albrecht's father.

"It's a really tough disease," Amado said.

The research here is focused on developing a gene therapy.

"In ALS, only motor neurons are affected by that disease," Amado said.

Now together in the lab, Amado and Soto Albrecht share a special mission.

"She is just really determined to put a dent in this disease," Amado said, "and we share that determination."

Research that they're hoping will someday be life-saving.

On April 8, there's going to be a push-up challenge for ALS to fund research.