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Newborn Screening Saves Lives Reauthorization Act
The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) was proposed earlier this year in the U.S. Senate and Congress. If passed, this Act would reauthorize federal programs related to newborn screening.
Newborn Screening and Pompe Disease Update
Recently, the U.S. Discretionary Advisory Committee on Heritable Disorders in Newborns and Children recommended that Pompe disease be added to the Recommended Uniform Screening Panel.
Meeting a Shooting STAR
Recently, I met a Shooting STAR. No, not a shooting star of the celestial kind, but of the human kind - the winner of the Charcot Marie Tooth Association’s “I’m a Shooting STAR” 2013 contest, ten-year-old Allison.
What is the Flu?
Influenza, caused by a virus, primarily affects the respiratory system. Influenza is also known as the flu, seasonal flu or respiratory flu. While the flu vaccine will not protect against all cases of influenza, it does provide significant protection.
Influenza and Neuromuscular Disease
Individuals with neuromuscular disease are considered to be at high risk for complications from influenza such as pneumonia or bronchitis, hospitalization, and more rarely, death. Make sure to talk to your physician about influenza and ask if you should receive vaccination against the flu.
Chiropractic Care and Neuromuscular Disease
Chiropractic care refers to a form of alternative medicine in which a chiropractor uses mechanical manipulation of the spine and other joints in the body. Chiropracty has been found to be useful in pain reduction for individuals with neuromuscular disease by researchers.
MDA SHOW of STRENGTH 2013
With a new slogan of MDA SHOW of STRENGTH, the 2012 MDA Telethon will again have a changed format, running on Sunday, September 2, from 8:00 p.m. to 11:00 p.m. ET. As always, it will include performances, celebrity appearances, and feature stories those affected by neuromuscular disease.
CMT Awareness Month 2013
The organizers of the CMT Awareness Month 2013 began planning for the 2013 event shortly after the successful 2012 CMT Awareness Month ended. Through this event, the Charcot Marie Tooth Association (CMTA) educates the public and raises awareness about Charcot Marie Tooth (CMT).
Disease Registries for Neuromuscular Disease
Disease registries have been formed to aid researchers searching for qualified individuals to participate as subjects in research protocols. Such research is needed to advance knowledge regarding the diagnosis and treatment of neuromuscular disease.
Medical Equipment Assistance Programs
Many individuals with neuromuscular disease require medical equipment. The cost of equipment can be prohibitive, however, and medical insurance does not always provide good coverage. Fortunately, there are programs available to assist individuals in obtaining the needed equipment.
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