Using Storytelling to Explore Genetics, Dementia and Family

Atlantic Fellow Susana Lay explores how an Argentine family is navigating the personal and scientific impact of an inherited genetic mutation linked to frontotemporal dementia.

^{Eugenia Streb with her daughters, Rosa and Carmen Rivoira, at their home in Buenos Aires, Argentina. Photo by Tomas Kjaervik.}

Writer and Atlantic Fellow Susana Lay has published a new story in EL PAÍS examining how one Argentine family is navigating an inherited genetic mutation associated with frontotemporal dementia.

Through the experiences of Eugenia Streb and her daughters, Rosa and Carmen Rivoira, the story explores the scientific, emotional and ethical questions that can arise when genetic information reshapes how people understand their health and future.

The article includes perspectives from Atlantic Fellow Nahuel Magrath, a neuropsychiatrist and director of the Frontotemporal Dementia Clinic at Fleni; Atlantic Fellow Carolina Ardohain, a neurologist and researcher at Fleni; and Jennifer Yokoyama, a UCSF professor with expertise in neurogenetics and neurodegenerative disease.

The reporting was supported by GBHI as part of Susana’s work to bring important brain health stories to wider audiences.

Read the complete story in Spanish or English.