While most visits to the doctor lead to a quick diagnosis, the same is not so for amyotrophic lateral sclerosis (ALS). On average, getting an ALS diagnosis takes 12 months — a long time, considering that on average, ALS patients live for only two to five years after diagnosis. Some might call the process a . . .
With the goal to improve diagnosis and care for people living with Duchenne muscular dystrophy (DMD), the Centers for Disease Control (CDC) today published updated Care Considerations for DMD. The comprehensive set of clinical care recommendations, drafted by a steering committee of experts from a wide range of disciplines with support from MDA, offers care providers guidelines for diagnosing DMD and managing its symptoms.
MDA began 2016 with an ambitious blueprint, full of changes and improvements — all designed to help us fulfill our mission promise to free individuals and families from the harmful effects of muscular dystrophy and related life-threatening diseases. Now, we reflect on our accomplishments and give thanks to our supporters.
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 . . .
This summer, as thousands of you joined our #LiveUnlimited campaign… 1,800 kids attended MDA Summer Camps across the country 2,000+ multidisciplinary team members aided kids and adults at MDA Care Centers in your neighborhoods 226 applications were reviewed for $7 million in research grants MDA will award next month With your support, the urgent work we do continues every day. In . . .
When Kathy Payette was in eighth grade, she started experiencing unexplained muscle weakness. Over a period of three years in the mid-1970s, she visited several doctors, all of whom were puzzled by her symptoms. When she was 17, Kathy spent a week at the Mayo Clinic with a team of doctors who concluded she had . . .
MDA recognizes the importance of early diagnosis for neuromuscular disorders to optimize opportunities for effective treatment. This includes supporting initiatives to understand the impact of newborn screening in neuromuscular disorders. In early March, MDA sponsored an international conference in St. Louis, MO, “Newborn Screening for Neuromuscular Diseases: Improving Patient Outcomes and Evaluating Public Health Impact,” that . . .