2021 was another challenging year for many, but once again, MDA’s grassroots advocates were relentless in ensuring lawmakers heard their voices. Throughout the year, our volunteers emailed, called, and met with important decision-makers urging them to act on vital public policy that will improve the lives of people living with neuromuscular disease and their families. . . .
2021 is a new year: The country has a new administration, and a new Congress has been sworn in. What isn’t new is MDA’s commitment to working tirelessly in Washington, DC, to transform the lives of people living with neuromuscular diseases (NMDs). Here’s a sneak peek at some of the issues we’ll be working on . . .
There’s no doubt 2020 has been a challenging year, but the commitment and passion of our MDA advocates have truly been a bright spot. As we close out the year, let’s recap your amazing accomplishments. Access to care and therapies from day one Thanks to the actions of advocates, together we made sure the lifesaving . . .
September is Newborn Screening Awareness Month, and today, Sept. 7, is World Duchenne Awareness Day, dedicated to spreading knowledge about Duchenne muscular dystrophy. As we honor both, we’re providing an update on our work to ensure every state in the US screens babies at birth for DMD, leading to improved outcomes and longer, stronger lives. . . .
It might only be a month into 2020, but MDA’s advocacy team and grassroots advocates are already making their voices heard. We expect the next 12 months to be crucial on Capitol Hill, and we’ll be working tirelessly in Washington, DC, to transform the lives of people living with neuromuscular disorders. Here’s a sneak peek . . .
MDA’s Medical Education department was established in response to the growing need for clinician education in neuromuscular disease (NMD). We are pleased to present four webinars that cover newborn screening (NBS) and early intervention, genetic testing, and best practices in multidisciplinary care. Our Medical Education department, together with key opinion leaders in the NMD field, . . .
Two years ago, I remember looking through the photos from the MDA Public Policy and Advocacy conference, excited to see so many in the neuromuscular disease community on Capitol Hill advocating for issues important to our community. I felt a sense of pride at what they were doing, but also, selfishly, a little bit of . . .
We believe in the power of community and the importance of building relationships with families going through similar experiences. If you are an individual living with a neuromuscular disease, we invite you and your loved ones to attend our MDA Engage Newborn Screening Webinar. It will broadcast live online on Friday, Aug. 30, from 11 . . .
Thanks in large part to the work of MDA advocates across the country, the US House unanimously moved yesterday to pass the Newborn Screening Saves Lives Reauthorization Act (HR 2507). Once enacted, this law will reauthorize the national newborn screening program for five years and make additional investment in order to modernize and make improvements . . .
On June 7, the U.S. Food and Drug Administration (FDA) approved Emflaza (deflazacort) to expand its labeling to include patients with Duchenne muscular dystrophy (DMD) who are between 2 and 5 years old. Emflaza was approved by the FDA in February 2017 for the treatment of DMD in patients 5 years and older, making it the first drug approved . . .
