Health Beyond the Blog: Jennie Erin Smith’s “Valley of Forgetting”

Jennie Erin Smith discusses how a rare genetic mutation shaped the lives of a Columbian community

by Michelle Arauz

Hearing Jennie Erin Smith speak in the latest episode of Health Storytelling, a livestreamed interview series conducted by journalist and author Maryn McKenna, was a powerful reminder of how storytelling can shape our understanding of health. Smith’s nonfiction book, “Valley of Forgetting: Alzheimer’s Families and the Search for a Cure,” was published in 2025. A moving episode of 60 Minutes, “The Alzheimer’s Laboratory,” inspired her to write it. At that moment in her life, she was looking to start a new book project and this was a perfect story for her to follow as she had lived in Latin America before. Smith documents not only a groundbreaking chapter in Alzheimer’s research but also the interpersonal side of health.

The story of early-onset Alzheimer’s in Colombia had been told previously in media and by its researchers. But Jennie explains that the narrative of the story was established by Dr. Francisco Lopera, a neurologist who discovered these families and the research groups who worked with them. Smith decided to give a voice to the community. In the book, she pays close attention to details such as family size, generational structures, and community culture to explain how the mutation took hold of their lives.

Colombia does not have the same HIPAA regulations as the United States; consequently, Smith was able to meet directly with the families in clinic rooms. Through these encounters, she humanized them. She rarely refers to them as patients, but instead as families and people with stories. These families were individuals with resilience. She dives into how families grappled with the choice of whether or not to donate brains for research. She demonstrates that health is more than biology; it is also about decisions that shape how communities experience an illness.

Her memory of the announcement of the clinical trial results stood out. When the failure of the drug being tried on the families had been announced, the research participants were not upset about their own lives but instead about what it meant for their children and future generations.

She explained that most Colombians earn only minimum wage, so even if the drug had worked, many families still might not have been able to afford it. Highlighting these inequities, her storytelling shows that health is not just about medical breakthroughs but about systemic barriers. You have to ask yourself the question: Who truly benefits from scientific progress?

Smith’s devotion to immersing herself in Latin America allowed her to write with authenticity and respect. Ultimately, witnessing the importance of researching not only the disease but also the community living with it, the everyday lives of rural Colombian people.

Valley of Forgetting: Alzheimer’s Families and the Search for a Cure can be found at Bookshop.org or at a bookstore near you. The Health Storytelling Series Author Q&A series is available to watch on YouTube.