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Clinical Trials and Neuromuscular Disease
Clinical trials involve experimental research in order to find more effective treatments and/or cures for disease. While neuromuscular disease cannot yet be cured, ongoing clinical trials (also called interventional studies) provide hope.
Stress, Humor, and Neuromuscular Disease
While neuromuscular disease is not funny, many of the situations that people find themselves in are funny. Seeing the humor in our struggles provides relief from stress and improve physical and emotional health.
Abilities Expo 2013
The Abilities Expo organization holds events across the U.S.A. Admission to the Abilities Expo is free. Take the opportunity to learn about the many products, services, and non-profit organizations that serve those with physical challenges, including those with neuromuscular disease.
Gratitude and Neuromuscular Disease
Gratitude, an attitude of thankfulness, does more than benefit the receiver. In individuals with neuromuscular disease, keeping a gratitude journal was found to improve energy, positive mood, feelings of connectedness, positive rating of one’s own life, and even sleep duration and quality.
Charcot-Marie-Tooth Association Circle of Friends
I have a confession to make – I have no practical experience in fundraising. I have never put together a fundraiser on my own and find the task daunting. Recently I ventured into the fundraising arena in one of the simplest ways possible, through starting a Circle of Friends with the CMTA.
Social Support and Neuromuscular Disease
This time I have determined to handle my health difficulties differently than I before. Because I opened up to others, I found the strength that I need to handle my diagnosis of Charcot Marie Tooth in an emotionally health way. In turn, I have been able to help others.
Why are MS and CP Not Neuromuscular Diseases?
Diseases that cause symptoms by directly affecting the central nervous system, rather than the peripheral nervous system, are not classified as neuromuscular disease. The symptoms of neurological diseases often overlap with other diseases, including neuromuscular disease, making diagnosis difficult.
What is an IEP?
Students that qualify for special education must have a formal Individualized Education Program (IEP). The IEP specifies the support that a child with physical and/or cognitive disability needs to succeed in the least restrictive environment.
What is a 504 Plan?
Schools in the U.S. that receive federal funding must adhere to the provision in Section 504 of the federal Rehabilitation Act of 1973. Section 504 guarantees individuals with disabilities equal access to education as a civil right. Plans based on Section 504 are referred to as 504 Plans.
MDA Transitions Center
The Muscular Dystrophy Association Transitions Center focuses on the needs of teens and young adults with neuromuscular disease. Launched in 2011, this site offers support, information, and resources targeting this group while also raising awareness of the challenges this group will experience.
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