HACKENSACK, N.J., April 23, 2013 /PRNewswire-USNewswire/ --Parent Project Muscular Dystrophy (PPMD) has released Putting Patients First , a white paper outlining recommendations to speed responsible access to new therapies for Duchenne muscular dystrophy (Duchenne) and other, rare, serious, and life-threatening neurological disorders. PPMD developed this white paper with an expert Advisory Committee on Policies to Promote Responsible Access to New Therapies, made up of leading authorities from the nonprofit, academic, medical, legal, and pharmaceutical sectors. Putting Patients First urges the U.S. Food and Drug Administration (FDA) to work with PPMD and the rare disease community to take advantage of opportunities created by the 2012 passage of the Food and Drug Administration Safety and Innovation Act to enhance patient access to new therapies for serious and life-threatening disorders. In implementing the law, PPMD and the Advisory Committee encourage the FDA to "strike a more appropriate balance between clinical certainty and patient access to potentially life-saving treatments." The white paper makes four recommendations: Pat Furlong, Founding President and CEO of PPMD, hopes that Putting Patients First will illustrate the need for the FDA to accelerate approval of potentially life-saving drugs intended to treat rare disorders, like Duchenne. Says Furlong, "We have been … Continue reading →

The Merced Fire Department didn't just "Fill The Boot" on Tuesday -- it overflowed the boot with more than $11,000 in donations, a record for the annual fund-raiser. The funds benefit the Muscular Dystrophy Association and help send local kids to an annual camp. More than 20 fire personnel volunteered to raise money for the association during the seven-hour event at G Street and Olive Avenue. "We've had a great turnout from our members which helps us collect more donations," said Fire Capt. Cory Haas. "Merced has traditionally done a great job supporting Muscular Dystrophy Association." The fund-raiser, a 59-year-tradition in cities across the country, is supported by the local firefighters union. Chad Englert, union president and Fire Department engineer, said the event would not be possible without the public's support. "We want to thank the community for donating. They're the ones that make it possible," he said. "We're just out here facilitating." Englert's daughter, 4-year-old Amanda, was a big helper during Tuesday's fund-raiser. "I want to help Dada," she said. As cars passed by on G Street, firefighter Jeff Trost, who helped organize the event, took the time to spread the word about the Muscular Dystrophy Association. He caught … Continue reading →