As the days become longer and the fireflies come out to play, it might be hard to start thinking about the new school year right around the corner. But when it comes to preparing for your child to have the supports that he or she needs for a fantastic school year, a little bit of . . .
We’re back! After a 3-year hiatus, advocates are going back to Capitol Hill, but this time virtually. We’re excited to announce that the MDA Advocacy Institute: Virtual Summit and Hill Day will take place on September 28th and 29th, and we hope you can join us! The Virtual Summit & Hill Day is the perfect . . .
Eight years ago, if you were looking for Billy Zureikat you would find him on the basketball court. The 38-year-old, former ESPN producer and current logistics manager’s passion was on the court. That all changed when years of symptoms and eventually a diagnosis in 2021 of limb girdle muscular dystrophy (LGMD) began to impact his . . .
For over 70 years, the Muscular Dystrophy Association has led the way as the #1 Voluntary Health Organization in the U.S. for people living with neuromuscular diseases. Through volunteer committees, boards, community events, and Summer Camps where kids build confidence and independence, volunteers are tightly woven into MDA’s fabric. We could not build on our . . .
Drug companies are developing more therapies for rare disease patients — and doing it faster — than ever before. But when it comes to enrolling minorities in clinical trials, the US track record is lagging behind. That subject was the focus of a March 15 session during the 2022 MDA Clinical & Scientific Conference in . . .
Did you know that according to a recent MDA survey, only 21% of adults living with neuromuscular disease are working part or full-time? Many individuals with disabilities have a desire to work but face employment hurdles, including the lack of wraparound support services, inaccessible workplaces, discriminatory wages, and a potential loss of Supplemental Security Income . . .
At Daytona International Speedway, if you see a silver wheelchair-accessible minivan flash by outside the stadium, it’s shuttling people who need assistance getting around the expansive venue. Philip James “PJ” Nicholoff would be happy knowing that his family donated his beloved van to the speedway, and its back windows display signage honoring him. A big . . .
It’s a new year and MDA’s commitment to transforming the lives of people living with neuromuscular disease through advocacy remains a top priority. We accomplished a lot last year, but we still have many vital goals to accomplish in 2022. We are excited to share a sneak peek at the advocacy team’s agenda for the . . .
For more than 70 years, the Muscular Dystrophy Association (MDA) has been committed to empowering people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their potential. Through the decades, MDA has led the way through our innovations in care, research, and advocacy. This year, we go bigger. In an interview with . . .
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. . . .