DuchenneConnect

The mission of DuchenneConnect is to provide resources to help individuals with Duchenne and Becker muscular dystrophy and their families understand the steps that may be required to confirm the diagnosis, and the benefits and limitations of genetic testing. The program works with regional and local resources where possible. DuchenneConnect allows participants to join the Registry to access services such as genetic counseling and genetic testing, and resources to assist in the understanding and development of new treatment trials in Duchenne/Becker muscular dystrophy. Becker muscular dystrophy is in the category of inherited muscle wasting diseases caused by a gene abnormality (mutation) that results in deficient or abnormal production of the dystrophin protein (dystrophinopathies). Duchenne muscular dystrophy (DMD) is characterized by weakness and wasting (atrophy) of the muscles of the pelvic area followed by the involvement of the shoulder muscles. As the disease progresses, muscle weakness and atrophy spread to affect the trunk and forearms and gradually progress to involve additional muscles of the body.