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 . . .
Neuromuscular disease refers to a diverse group of rare conditions that affect some part of the neuromuscular system, such as: Muscles Nerves in the peripheral nervous system (arms and legs) Nerves in the central nervous system (spinal cord) The neuromuscular junction, where nerves and muscles meet Neuromuscular diseases generally cause muscle weakness, fatigue, and other . . .
The Muscular Dystrophy Association is dedicated to empowering and encouraging you to manage your diagnosis and care plan. Feeling prepared for your visit to an MDA Care Center and knowing what to expect can ensure that all of your questions regarding your or your loved one’s care plan are answered. Throughout this article, you will . . .
Since MDA’s founding in 1950, families have come to know MDA as a critical resource to help locate support and resources. Assistance obtaining durable medical equipment is one of the primary needs that our families encounter. MDA understands that navigating insurance and equipment needs can be difficult, and we are here to help. MDA’s National . . .
Here at MDA, we are working to ensure all contact information is up-to-date for those who are registered in order to serve you as well as we possibly can. If your dependent has recently turned 18, please encourage them to email our MDA National Resource Center, at resourcecenter@mdausa.org, to update their contact information and to hear . . .
For 18 years, Linda VanVliet spent most of her non-working time taking care of her daughter, Shelby, who was diagnosed with congenital muscular dystrophy at 3 years old. (That diagnosis was later changed to titin myopathy.) Linda’s work as a school nurse also allowed her to step in quickly when Shelby needed care. “For a . . .
Personal care attendants (PCAs) play a crucial role in helping people in the neuromuscular disease community day to day. Whether they’re assisting with activities of daily living or managing medical equipment, PCAs often make independent living possible. But they can be hard to find. The first hire — or the second or third — might . . .
In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .
Just in time for back to school: updated guides for teachers of students living and learning with neuromuscular diseases
Writer and artist Erin Brady Worsham shares how ALS can affect your relationship with the furry members of your family.
