Over 500 of the sharpest minds in research have gathered at MDA’s Scientific Conference as they work to unlock the secrets of neuromuscular diseases.
Researchers are looking for people with facioscapulohumeral muscular dystrophy (FSHD) to participate in a phase 2 clinical trial, being conducted by Acceleron Pharma, to test the investigational drug ACE-083.
Muscular dystrophy is a term that refers to a number of diseases that cause progressive loss of muscle mass resulting in weakness and, sometimes, loss of mobility. There are many different kinds of muscular dystrophy, each affecting different groups of muscles. In some types of muscular dystrophy, symptoms begin in childhood. In other forms, symptom . . .
Since its inception, MDA has invested more than $1 billion in neuromuscular disease research to uncover new treatments and cures. In 2016 alone, MDA awarded 66 new research, development and research infrastructure grants with a total funding commitment of more than $17 million. These and other MDA grants fund research projects designed to uncover the . . .
This summer MDA challenged our families, friends, sponsors, staff and others around the nation to share their stories about living life without limits despite the challenges of neuromuscular disease. Some shared moments tied to pursuing an education or career that was thought to be out of reach. Some talked about skydiving, hiking or running a . . .
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 . . .
When Dr. Ryan Wuebbles stepped into a lab in 2002 to study muscular dystrophy, he wasn’t just a bright-eyed, eager graduate student. He was also a young man who wanted to understand his own disease.
Peter Jones, associate professor in cell and developmental biology and neurology at University of Massachusetts Medical School in Worcester, was awarded an MDA research grant totaling $300,000 over a period of three years to develop a research mouse model for facioscapulohumeral muscular dystrophy (FSHD). Please describe your current research. Facioscapulohumeral muscular dystrophy (FSHD) is one . . .
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, . . .
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 . . .
