MDA is excited to announce that we are accepting applications for the inaugural National Community Advisory Committee, a group that will advise MDA on matters of importance to families living with neuromuscular diseases and help inform MDA’s efforts to support individuals to live unlimited.
OK, friends. I’ve got some really great news. As you know, MDA’s commitment to improving the lives of young adults living with muscle-debilitating diseases is near to my heart. It’s why I chose to accept the role as the first adult MDA National Goodwill Ambassador. It’s been almost a year since we began implementing MDA’s . . .
For individuals and families living with neuromuscular diseases, having access to the right support is paramount to living life to the fullest. Groundbreaking research, clinical trials and care from the best physicians are critical. But so is everyday help, and that’s where MDA Care Center social workers come in. Social workers can help individuals address . . .
Clara was 2 years old when she was diagnosed with congenital muscular dystrophy. Her family was referred to their local Minneapolis MDA Care Center, and when they got there, Clara’s mom, Becky, says it felt “a bit like coming home.” Our MDA Care Center is a huge gift for us as working parents managing a . . .
Last week, MDA’s Emergency Preparedness Webinar explored how important it is for individuals with disabilities or with access and functional needs to design a personalized emergency plan for themselves and their families so they are prepared and empowered to handle any kind of emergency or disaster. If you were unable to join last week’s webinar, . . .
If there was one piece of advice MDA Resource Specialist Ashleigh Peska could offer individuals with muscular dystrophy and other muscle-debilitating diseases, it would simply be, “don’t quit!” Ashleigh, who lives with limb-girdle muscular dystrophy (LGMD), is a shining example of this mantra. A college graduate and former MDA Iowa State Goodwill Ambassador, Ashleigh has . . .
Today we couldn’t be happier as, together with the Duchenne community, we celebrate FDA accelerated approval of eteplirsen to treat kids and adults with some forms of Duchenne muscular dystrophy (DMD). “This is something that we’ve watched, and hoped and prayed for, and seen it develop over the last seven years or so,” said Josh . . .
Since the tender ago of five, Hugo Trevino, who has Spinal Muscular Atrophy (SMA), has been involved with MDA. From participating in MDA Summer Camp as a child to rallying behind causes like Fill the Boot and Muscle Walk, Hugo has always been dedicated to helping others live longer and grow stronger. Now, as a . . .
MDA is pleased to announce that we have launched a new MDA National Resource Center that is now available to provide families one-on-one support from trained specialists. You can contact our MDA specialists at firstname.lastname@example.org and 800-572-1717 for resources and support. Specialists are available Monday through Friday 8 a.m. to 5:30 p.m. CST and are typically . . .
For the past eight months, you’ve heard a lot from MDA about our deepened focus on the families we serve. In January, you saw MDA launch a revitalized brand that puts families at the heart of our mission — something we represented literally with a heart inside our new logo. Throughout the summer, we’ve celebrated . . .