Morrison leads measure to improve early diagnosis of fatal pediatric disease

SPRINGFIELD - Standing alongside advocates from Parent Project Muscular Dystrophy at a press conference Wednesday, State Senator Julie Morrison outlined her initiative to require each newborn to be screened for duchenne muscular dystrophy.

"DMD is a devastating disease - tragically taking young children from their parents," said Morrison. "Requiring every newborn to be screened for duchenne muscular dystrophy will save precious lives and restore hope."

Senate Bill 2658 would require each newborn to be screened for the disease. This would increase the rates of early detection, giving those diagnosed the ability to receive affective treatment, far earlier than they would have otherwise.

Duchenne muscular dystrophy is a genetic disorder caused by a change in the dystrophin gene affecting 1 in 3,500 boys each year worldwide. It's characterized by the progressive loss of muscle, which results in deterioration of the skeletal heart, and lung muscles. Because the dystrophin gene is found on the X-chromosome, it primarily affects males, while females are typically carriers.

By the time the symptoms of DMD are detected, it is typically too late to treat. Additionally, it takes 2.5 years on average to diagnose after caregivers first notice symptoms - giving children little to no time to receive help.

"PPMD's Advocacy Day in Illinois marks a pivotal moment in our fight to end Duchenne. Today, as we champion newborn screening legislation and raise awareness through SB 2658, we pave the path towards a future where every child born with Duchenne receives the early intervention and care they deserve," said Pat Furlong, President & CEO of Parent Project Muscular Dystrophy. "We are honored to have the opportunity to engage directly with Illinois legislators and policymakers about the importance of these legislative measures and the impact they can have on the Duchenne community."

Senate Bill 2658 passed the Senate and awaits further consideration in the House.