Champion for Change: How 14-Year-Old Zachary Thomas is Transforming Newborn Screening in Alabama

In the coastal town of Foley, Alabama, an extraordinary teenager is revolutionizing rare disease advocacy. Zachary Thomas, a recipient of Sanofi's 2025 TORCH Award, has transformed the landscape of newborn screening in his state, ensuring future generations have better access to early diagnosis and treatment.

Born with MPS1 (Mucopolysaccharidosis type I), Zachary channeled his personal experience into powerful advocacy that culminated in the passage of the Zachary Thomas Newborn Screening Act. This landmark legislation aligns Alabama's screening program with federal recommendations, adding crucial conditions like MPS1 to the state's newborn screening panel.

His efforts have created a ripple effect throughout the rare disease community, inspiring families to become more engaged in awareness and advocacy. By working alongside Alabama Rare, Zachary has become a respected voice in the state capitol, where his passionate advocacy has won over legislators and stakeholders alike.

As Zachary continues to champion newborn screening, his story serves as a powerful reminder that age is no barrier to creating meaningful change. Through his work, he exemplifies the core values of the TORCH Awards—Tenacity, Outreach, Resilience, Community, and Hope—while paving the way for a future where every baby has access to comprehensive screening, regardless of where they're born.