One of the most mysterious and frightening entities in medicine are prion diseases — rare neurodegenerative disorders that are usually infectious in nature but involve not bacteria or viruses, but proteins. Prions are misfolded proteins that can induce normal proteins to become misfolded as well, resulting in a chain reaction that leads to irreversible brain damage and death. What makes prions alarming is that they are incurable, can incubate for decades in a person's brain without symptoms, and are usually associated with 100% mortality within months to a few years. 

Sonia Vallabh, PhD was a recently-married lawyer in her early career when she witnessed her mother's baffling sudden health decline and death. Her mother was ferried from hospital to hospital, yet dozens of doctors could not figure out why she was seemingly succumbing to rapidly progressive dementia at the age of 52. It wasn't until after her death that Vallabh discovered the cause was a genetic prion disease. Subsequent testing revealed that Sonia Vallabh herself had inherited the same genetic abnormality. Determined to find a solution, Vallabh and her husband Eric, a transportation engineer, decided to retrain as biomedical scientists in a race to cure her before it grew too late. The couple now leads a prion research lab at the Broad Institute at MIT and Harvard. They are also the co-founders of the nonprofit Prion Alliance. 

Over the course of our conversation, Vallabh opens up about what it was like to accompany her mother in her last months of life, the psychological toll of dealing with a fatal medical mystery, how she lives each day with an awareness of how ephemeral life is, what prion diseases are and what makes them so difficult to treat, what makes her optimistic about the future of her work, and more. 

In this episode, you’ll hear about: 

3:23 - Vallabh’s early memories of her mother and the devastating experience that overcame her at 52 years old

16:37 - The process of grieving the loss a parent

22:32 - What prion diseases are

25:35 - How Vallabh made the decision to undergo the genetic testing that confirmed she inherited a mutation thah causes prion disease 

36:27 - Vallabh’s major career change to become biomedical researchers 

45:50 - Where the quest for an effective therapy for prion disease currently stands 

52:08 - Vallabh’s message to listeners on how to approach life 

View Sonia Vallabh’s TED Talk on her quest to cure prion disease. 

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