U.S. Sen. Ron Johnson
Press Release

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

 

By - Dec 16th, 2025 01:22 pm

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.

 

NOTE: This press release was submitted to Urban Milwaukee and was not written by an Urban Milwaukee writer. While it is believed to be reliable, Urban Milwaukee does not guarantee its accuracy or completeness.

Mentioned in This Press Release

People:

Leave a Reply

You must be an Urban Milwaukee member to leave a comment. Membership, which includes a host of perks, including an ad-free website, tickets to marquee events like Summerfest, the Wisconsin State Fair and the Florentine Opera, a better photo browser and access to members-only, behind-the-scenes tours, starts at $9/month. Learn more.

Join now and cancel anytime.

If you are an existing member, sign-in to leave a comment.

Have questions? Need to report an error? Contact Us