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, . . .
Madhuri Hegde, associate professor in the department of human genetics at Emory University in Atlanta, was awarded an MDA research infrastructure grant totaling $300,000 over a period of three years to continue groundbreaking work to identify and characterize new gene defects that can cause limb-girdle muscular dystrophy (LGMD). In the era of precision medicine, it . . .
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 1-833-ASK-MDA1 (1-833-275-6321) for resources and support. Specialists are available Monday through Friday 8 a.m. to 5:30 p.m. CST and are . . .
Starting a new school year is hard on every parent and child, but it’s particularly difficult when you have a child with special needs. As a parent you want to make sure that those needs are met all day every day, even if you are not with them. Even after you explain what your . . .
September is National Preparedness Month. Emergencies can happen in an instant and without warning. From weather-related events and other natural disasters to emergencies such as chemical spills and power outages, the unexpected can put you and your family in danger — unless you plan ahead. Please join us for an important discussion about how families living . . .
Steven Markus, assistant professor at Colorado State University in Fort Collins, Colo., was awarded an MDA research grant totaling $300,000 over a period of three years to study alterations in the dynein gene and their effects in spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS). His work to elucidate the molecular basis for dynein . . .
Investigators are seeking people to participate in a phase 2 clinical trial, sponsored by Idera Pharmaceuticals, to evaluate the effect of the experimental drug IMO-8400 on skin lesions and muscle weakness in dermatomyositis. While the cause of dermatomyositis is unclear in most cases, it is known that ongoing inflammation triggered by the disease, over time, . . .
In an auditorium in Bearden, Arkansas, Doug Haynes was sitting in his wheelchair by the stage, dressed in his graduation robes. The high school senior had waited for this moment for four years. His physical therapist stood in front of him, pushing away the chair’s footrests and grasping the gait belt around Doug’s waist. Sensing . . .