Sen. Johnson Applauds Addition of Duchenne Muscular Dystrophy and Metachromatic Leukodystrophy to Newborn Screening Panel

Sen. Johnson Applauds Addition of Duchenne Muscular Dystrophy and Metachromatic Leukodystrophy to Newborn Screening Panel
December 16, 2025
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WASHINGTON
– Today, U.S. Sen. Ron Johnson (R-Wis.)
applauded
the U.S. Department of Health and Human Services’ decision to add Duchenne Muscular Dystrophy (DMD) and Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel (RUSP), expanding access to early detection for two devastating rare diseases. The senator recognized Trickett Wendler, Frank Mongiello, Matthew Bellina, and Laura and Jordan McLinn for their tireless work and advocacy.
“I championed Right to Try to give those with terminal or rare diseases hope and the freedom to try experimental drugs and therapies. I am grateful to Secretary Kennedy and to all those advocating for early screening of rare diseases to give families the chance to act when treatment can be most effective,”
Sen. Johnson said.
“[This] wouldn’t have happened without you, Mr. Secretary, and the people that work with you tirelessly to do what’s right. God bless you and thank you,”
Sen. Johnson concluded.
Sen. Johnson’s full remarks can be found
here
.
Sen. Johnson’s history of work with Right to Try can be found
here
.
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