During a period in which science is under assault by social media and politicians, this is a welcome story of collaboration among doctors, drug researchers, and the families of children with a rare genetic disorder. Kristen DiMercurio lets the clarity of the author's prose carry the weight with her straightforward narration, but her voice warms up in all the right places, including the many heartbreaking passages chronicling the short lives of these children. Amy Dockser Marcus knits together an argument for citizen science, in which traditional tools such as clinical trials can be supplemented with data and observations from families living with rare diseases that get little attention from pharmaceutical companies. D.B. © AudioFile 2023, Portland, Maine [Published: MARCH 2023]
Trade Ed. Penguin Audio 2023
DD ISBN 9780593671849 $15.00
Library Ed. Books on Tape 2023
DD ISBN 9780593671856 $47.50
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