Juliette’s Story – The Power of Hope & Advocacy
Baby Juliette’s story is proof that advocacy can change—and save—children’s lives. In 2019, Children’s helped advocate to get spinal muscular atrophy (SMA)—a rare, devastating genetic disorder—added to Nebraska’s state newborn screening, and Juliette is one of the first babies to benefit as a result. Thanks to the screening, her diagnosis was detected early so that she could get time-sensitive access to a disease-reversing gene replacement therapy. Special thanks to Juliette’s neurologist, Geetanjali Rathore, M.D., and Liz Lyons, Children’s director of Advocacy & Government Affairs, for their advocacy on this issue.