Please ensure Javascript is enabled for purposes of website accessibility Rivera raises awareness of need for funding for Duchenne muscular dystrophy at Capitol

Rivera raises awareness of need for funding for Duchenne muscular dystrophy at Capitol

HARRISBURG, Oct. 6 – State Rep. Nikki Rivera held a news conference to raise awareness about Duchenne muscular dystrophy last week at the Capitol.

Duchenne muscular dystrophy is a condition that causes skeletal and heart muscle weakness that quickly gets worse with time. Symptoms usually begin by age 6 and mainly affect boys. Currently, there is no cure for the disease.

“We must ensure sustained funding for research and access to care for families impacted by this terrible disease,” Rivera said. “Investments in Duchenne muscular dystrophy research will improve the lives of those affected and get us closer to a cure for this terrible disease.”

Speakers at the news conference included: Tracy Horst who spoke about the urgent need for funding for Duchenne research; and Dan Murphy, whose son has the disease, who spoke about caring for a child with the disease.

Introduced this session, H.B. 1715 would amend the Newborn Child Testing Act to include Duchenne muscular dystrophy to avert preventable complications, reduce long-term healthcare costs, and provide families with critical resources and support.