In rural India, a rare genetic disease called spinocerebellar ataxia has been causing people to gradually lose control over their body movements. As Ankur Paliwal writes, “Eventually many ataxia patients in resource-strapped countries like India end up spending their days in bed, dependent on others, until they die.” Patients with the disorder “remain invisible to the health system,” he writes, “because they don’t have popular champions. Institutional support for ataxia is almost negligible.” Paliwal describes the work of a few determined scientists and doctors who have been trying to unravel the mysteries of the disease. Judge Robert Lee Hotz, a former science reporter for The Wall Street Journal and currently president of the Alicia Patterson Foundation, said Paliwal “delivers an unusually intimate and humane science narrative that explores the genetics and devastating impact of a rare neurodegenerative disease. By achieving an unusual trust among the victims and families that he interviewed, he developed an impressive grasp of the social and biomedical effects of this disease and the search for healing.” Hotz added that Paliwal’s “exploration of the emotional consequences of the disease is matched by his knowledgeable technical explanation of the scientific effort to understand the molecular biology of the disease. In this story of life, death and DNA, he raised the craft of science journalism to the level of literature.” Judge Sarah Wild said Paliwal’s story “contains a pervasive humanity that puts faces and emotions to a rare disease in India. This remarkable piece is compassionate and meticulous, a fine balancing act driven by a strong narrative.” This is the second year in a row that a piece from online outlet FiftyTwo has won the Gold Award in this category. “I dedicate this award to the scientists, and families living with ataxia who allowed me into their homes and lives,” Paliwal said. “This story and the award are a result of their generosity.”
