MDA’s Shamrocks Against Dystrophy Program 2015
Each year, 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 through the MDA. In 2014, Shamrocks raised $21 million!
Roussy-Levy Syndrome, also known as hereditary areflexic dystasia, affects the peripheral nervous system. Distinctive characteristics of this variant of CMT include tremors (rhythmic shaking) in the hands and arms and unsteadiness of gait (gait ataxia).
Coping With Grief Over Health Losses
When I first received a diagnosis with a neuromuscular disease, I went through a variety of emotions. Looking back, I recognize these emotions as part of the grieving process.
U.S. Legislative Update for Neuromuscular Diseases
Recently, important legislation affecting the neuromuscular disease community in the U.S. was passed by the House and Senate, and signed into law by the President. As members of this community, it is important to remain informed and to act in support of any legislation that is important to you.
Newborn Screening and Neuromuscular Disease
As diagnosis and treatment protocols become more advanced, newborn screening will likely become increasingly possible for neuromuscular disease. As these advances are made, ethical and practical decisions regarding newborn screening for neuromuscular disease will need to be made.
Newborn Screening Saves Lives Reauthorization Act
The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) was recently passed into law. This Act reauthorizes federal programs related to newborn screening.
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