A scientific adventure whose ingredients include the looming threat of a fatal disease, the decision to reinvent themselves as biologists, and the goal of silencing prions.

The clinical trial with antisense oligonucleotides, born of their efforts, is considered one of the most interesting trials of 2025, but this is only a part of the story. This married couple is also pursuing other avenues to halt the onset of prion diseases. In the summer of 2024, they published a study in Science using epigenetic editing in mice. Then, in January 2025, their experiments with base editing were published in Nature Medicine. Yet Sonia Vallabh was a newly graduated jurist, and her husband, Eric Minikel, was working in urban planning, when they discovered that she carried a mutation that would condemn her to die of fatal familial insomnia within two or three decades.

This is hardly the first case in which a rare disease patient or a family member has taken fate into their own hands by becoming an expert in a disease with no cure. Think of Sammy Basso, for example, who contributed to preclinical research on fixing progeria through gene editing, or Terry Horgan, whose brother attempted to tailor a CRISPR therapy for Duchenne muscular dystrophy — though without succeeding in saving him. The phenomenon has already attracted the attention of Nature Biotechnology, which dedicated an in-depth article to the contributions of patient-scientists.

Sonia and Eric’s story, however, is exceptional. They both left their careers in completely different fields overnight, went back to university, earned PhDs, and opened a dedicated lab at one of the hubs of the CRISPR revolution — the Broad Institute in Boston. In doing so, this husband-and-wife team has propelled prion research into the era of new genomic techniques.

It hasn’t been easy, as they’ve told numerous American media outlets, from Wired to The New York Times, The Atlantic, and The New Yorker. It’s worth noting that, in addition to determination and talent, they’ve also been fortunate to meet the right mentors — including the great geneticist Eric Lander. Be that as it may, the milestones of their journey are nothing short of astonishing.