Participants Sought for Dermatomyositis Trial

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, . . .

Read More

Some said he couldn’t play sports. Ethan Lybrand said “Watch me!”

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 . . .

Read More

Participating in Clinical Research Means Giving of Yourself — Literally — to Science

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, . . .

Read More

Improving Newborn Screening for Neuromuscular Disorders

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 . . .

Read More

Accessible Air Travel: An Important Element of Living Life Without Limits

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 . . .

Read More