Recently, several new registries for individuals with various forms of congenital muscle disease have been started. These registries create databases in order to improve awareness, research effectiveness, and communication. Participation is voluntary and confidentiality will be protected.

Lately, I have become increasingly involved in legislative advocacy. These efforts regularly involve writing to my elected officials to raise awareness regarding issues such as research funding and legislation regarding quality of life issues for those with neuromuscular disease.

Social networking has made connecting with others easier than ever. Interacting through social networks may be especially beneficial for those who have significant disability limiting their opportunities to interact with others in person, including many people with neuromuscular disease.

Many neuromuscular disease diagnoses can now be confirmed by genetic testing. But many facing the decision to test or not to test may have questions about whether or not to pursue genetic testing. These questions may become even more complicated when children are involved.

Weakened respiratory and upper airway muscles caused by neuromuscular disorder can cause insufficient breathing during sleep in both adults and children, leading to increased risk of obstructive sleep apnea (OSA). During obstructive sleep apnea, a person has reduced air flow or stops breathing.

Retailers all over the U.S.A. sell green Shamrocks and gold Shamrocks. The money raised through the Shamrocks Against Dystrophy Program funds research, education, summer camps, and the clinical and other services the Muscular Dystrophy Association funds. In 2012, Shamrocks raised $23 million!

Translational research into neuromuscular disease focuses on taking basic research advances and ‘translating’ these results into usable therapies. Researchers are increasingly finding applications for basic research to the diagnosis, progression, and treatment of neuromuscular disease.

Contractures occur in the joints of many individuals with neuromuscular disease. These include muscular dystrophy, myopothy, Charcot Marie Tooth, ALS, and Friedrich’s ataxia. Contractures cause deformity in the affected joint, often leading to pain and functional difficulties.

The Functional Fitness DVD series, created by occupational therapist Suzanne Andrews, provides a series of videos aimed at increasing functional fitness for those experiencing health issues. For purposes of this review, her Arthritis and Pain Free Back & Neck DVDs were sampled.

Since 2010, the Muscular Dystrophy Association (MDA) has produced a series of free live and archived educational presentations called the Public Webinar Series. Expert-led topics include a variety of important issues. Make time to attend a high quality educational presentation from your own home.