2025-il-nbs

Last year, Illinois made history by unanimously passing SB 2658, adding Duchenne Muscular Dystrophy to the state’s newborn screening panel. This was a monumental step forward for early diagnosis and care for babies born with Duchenne — but now we need your help to ensure this law is implemented.

This year, we must secure funding in the state budget to make newborn screening for Duchenne a reality. That means passing SB 2261, which provides the necessary support to cover the cost of the Duchenne newborn screening program.

Why it matters:

  • Duchenne is a progressive, fatal neuromuscular disorder.
  • Early detection is critical — it leads to earlier access to care, therapies, and clinical trials that can extend and improve lives.
  • Without funding, the law we passed cannot be implemented.

Contact Sen. Elgie Sims and the state’s Senate Appropriations committee and urge them to support SB 2261 and include Duchenne newborn screening funding in the Illinois state budget.

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