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 . . .
The Lybrand family motto is “finish strong,” which, for them, means never giving up and always turning can’ts into cans. It’s no wonder, then, that the youngest Lybrand, 6-year-old Ethan, is a living embodiment of the Live Unlimited spirit. Just three days before his second birthday, Ethan was diagnosed with Duchenne muscular dystrophy. Although the deadly disease will gradually . . .
The Informed Consent Authorization Form is 12 pages long. My husband, Allen Carney, reads it carefully, initials in several places and signs at the end. And that’s the easiest part of participating in a research project. Welcome to the world of giving your time and body to research for Facioscapulohumeral muscular dystrophy. My husband Allen, . . .
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 . . .
In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the . . .
Think back to when you were 16. It may have been a time of excitement, optimism, awkwardness, and questionable style choices. These feelings during adolescence are universal – and are also experienced by young adults with neuromuscular diseases. Like all teenagers, the youth served by MDA have incredible talents, aspirations and promise. They also . . .
When a family first receives a muscular dystrophy diagnosis, the news can be overwhelming. Families suddenly find themselves faced with the need to learn about the disease, how to manage their loved one’s care, how to find the right resources, and how to plan for what lies ahead. Even those who have traveled this road . . .