Med Student Races to Cure ALS Before Her Own Clock Runs Out

A University of Pennsylvania medical student is working against the clock to cure the disease she'll likely develop herself.

Yentli Soto Albrecht carries a genetic mutation that gives her a 50% chance of getting ALS or dementia by age 55, rising to 95% by 65. The same mutation took her father's life two years ago when she was just 30.

Most ALS patients die within three years of diagnosis, losing their ability to move and eventually breathe. Frank Albrecht, an educator beloved as "Brother" in Lancaster, Pennsylvania, died at 66 in his daughter's arms.

Now Soto Albrecht is turning her race against time into hope for thousands. She's managing 11 research projects focused on testing treatments, identifying early biological markers, and accelerating research with patient samples.

Her approach at conferences is direct. She hands potential collaborators a business card showing her hugging her father and asks: "Will you help me survive?"

It's working. She's helped scientists access grants, clinical data, and crucial research materials. One major effort aims to identify biological markers in people who carry the mutation but haven't developed symptoms yet, a game-changing gap in current research.

Treatment options haven't improved much since the 1990s. The main drug, Riluzole, extends life by only a few months. For genetic carriers like Soto Albrecht, there are no prevention options at all.

She banked her own stem cells and her father's a month before he died, so scientists can compare active disease with pre-symptomatic carriers. She's also collaborating with BrainXell, a Wisconsin company, to improve researchers' access to patient stem cells.

The Ripple Effect

Soto Albrecht's work extends far beyond her own survival. Through her role with the nonprofit Genetic ALS & FTD: End the Legacy, she's helping build infrastructure that could benefit the 10% of ALS patients whose cases are inherited.

She changed her medical specialty from infectious disease to neurology, inspired by the care gaps she experienced firsthand. When she received her positive genetic test, she got just a piece of paper with her odds.

She's hosting Pushups for ALS this week at her father's former workplace, McCaskey High School in Lancaster, to fund research. The event honors Frank Albrecht's 42-year legacy of helping students as a support facilitator.

Soto Albrecht expects to graduate as a neurologist in 2027. Her mission is simple: build the type of care she seeks for herself and create it for everyone who will need it.

She carries her father's legacy of service while racing to rewrite her own ending.