12/17/2025
Today is a big day in our world. Duchenne Muscular Dystrophy (DMD) has been added to the Recommended Uniform Screening Panel, meaning babies will now be tested at birth.
When Peyton was diagnosed, my OB-GYN told me there was no test that could have predicted his disease. Even if we had known earlier, there were no treatments available. The words we heard were: “Your son has Duchenne Muscular Dystrophy. There is nothing we can do. Take him home and love him.”
Today, that story is different. There are exon-skipping therapies, gene therapies, and more in the pipeline. I’ve always said I never wanted another parent to hear what we did. I wanted there to be a day when a doctor could say, “Your child has DMD, and here’s what we can do.”
We still don’t have a cure. And for many kids, current treatments may not work. But we are closer than we’ve ever been.
Thank you to the parents and advocacy groups who fought tirelessly for this moment. Most importantly, thank you to the warriors who endured clinical trials. Without your bravery, there would be no options today. And to the families who carry an unimaginable burden while walking hand in hand with the bravest humans I have ever met, we see you too. 💙
“As my uncle has said, ‘although children may be the victims of fate, they will not be the victims of our neglect.' This action honors that principle. Early screening gives every child a fair chance at timely, effective care, and it delivers families the answers and treatment options they deserve—right when they need them most.” —Secretary Kennedy
