#63-How can you cure ALS & FTD in a race against time?

In this episode, Yentli Soto Albrecht, PhD, shares her personal journey with ALS and FTD, her scientific research, and her efforts to accelerate the search for a cure. Discover how her story fuels her advocacy and innovative projects to fight these neurodegenerative diseases.

 

Key words: ALS, FTD, genetic research, neurodegeneration, Cure C9, gene therapy, prevention trials, scientific collaboration, patient advocacy

 

Key Topics:

• Genetic causes of ALS and FTD and the C9 repeat expansion
• Current challenges in clinical trials and drug development
• The role of patient advocacy and community engagement
• Innovative research projects and collaborations
• The importance of accessible biomarkers and diagnostics

 

Guest bio:

Yentli Soto Albrecht, PhD, is a 9th-year MD-PhD student at the University of Pennsylvania and will complete her medical degree in 2027. She earned her PhD in 2024 in the Douglas Wallace lab at the Children’s Hospital of Philadelphia, showing that mitochondrial oxidative phosphorylation restricts SARS-CoV-2 replication and that natural mitochondrial DNA variation modulates viral pathogenesis, work recognized with the Richard K. Root Prize for Infectious Disease Research in 2025. She was president of the American Physician Scientists Association from 2022 to 2023, managing a budget of more than $300,000 and reaching over 5,000 dual-degree applicants across her five-year tenure. She was preparing for a career as an infectious disease physician-scientist when her father was diagnosed with genetic ALS in June 2023 and she learned she carried the same C9orf72 repeat expansion that was taking his life, the most common genetic cause of both ALS and frontotemporal dementia (FTD).

 

Her father, Frank Albrecht, died in August 2024, and six months later she pivoted to C9orf72 neurodegeneration. She has since built eleven collaborative projects across eight countries, including synchrotron imaging comparing aggregates in C9 ALS and C9 FTD, nanosensor-based biomarker discovery, drug repositioning, and the first commercial C9orf72 iPSC biorepository, which begins with her father’s cells and her own. She has secured more than $280,000 in grant funding for her collaborators and raised over $66,000 through Push Ups for ALS, a carrier-led fundraiser in her father’s memory. She co-founded CureC9, a program within EverythingALS governed by an eight-member scientific advisory board, which has raised $216,711 toward a $12 million flagship effort and meets for the third time in September to plan the first prevention trial for genetic ALS and FTD. She was the inaugural End the Legacy Community Science Liaison fellow, brings the science back to genetic carriers in lay terms through her video series Search for a Self Cure, and has accepted an offer to join Eli Lilly’s Talent Development Academy in Boston as a postdoctoral scientist in ALS disease biology and drug discovery after medical school. Next year, she will apply to neurology residency programs for a 2028 start. Dr. Soto Albrecht draws on her position as patient, scientist, and physician-in-training to accelerate therapies for familial ALS and FTD within her lifetime.

 

Resources related to today’s topic:

• CureC9 website
• The Association for Frontotemporal Degeneration
• The ALS Association
• Compassionate Care ALS
• North Star ALS
• End the Legacy
• Everything ALS
• Breakthrough Prize Video 

 

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