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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.
TSA Cares Helpline
The Transportation Security Administration (TSA)provides a helpline dedicated to helping travelers with disabling conditions or medical issues called TSA Cares, created to answer concerns regarding security screening policies and procedures related to individuals with medical needs and disability.
Is Charcot Foot the Same as Charcot Marie Tooth?
Although Charcot Foot, also called Charcotís arthropathy or neuroarthropathy, has some of the same symptoms as Charcot Marie Tooth, these two diseases have different causes. Careful diagnosis is required to receive the proper care for these two distinct diseases.
Balance, Darkness, and CMT
The sudden darkness in the movie theater caught me off guard, and, off balance, I could not walk. I found that I had to wait until my eyes adjusted to the dim light enough to aid my balance to begin walking again. Soon, however, I was headed up the steps and to my seat to enjoy the movie.
The Sound of a Wild Snail Eating Book Review
The Sound of a Wild Snail Eating, by Elisabeth Tova Bailey, recounts Ms. Bailey's observations of and relationship with a snail. A friend brought her the snail while she was incapacitated by a mysterious neuromuscular disease that left her unable to walk, sit, or care for herself.
Keeping a Gratitude Journal
Give keeping a gratitude journal a try! You might just find that keeping a gratitude journal becomes an important tool for maintaining and increasing your joy and happiness.
Managing Caregiving Stress
Caregiving stress should be taken seriously and, left untreated, can lead to caregiver burnout. While the demands of caregiving may lead to stress, recognizing and taking action to manage caregiving stress will benefit the well-being of both the caregiver and the care receiver.
What is Caregiving Stress?
Caregiving stress arises from the emotional and physical challenges of providing caregiving. While caregiving for family member can be rewarding, caregivers often experience stress. Long term caregiving stress can lead to caregiver burnout if unrecognized and untreated.
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