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Inherited Neuropathies Consortium
Registering with the ICN was quick and easy. If you have CMT, consider registering with the INC so that you can be part of the search for more effective treatments and cures for the inherited neuropathies.
Interactive Games for Young Children
Everyone loves to play, including babies and young children with disabilities that limit their mobility. Interactive movement games engage young children, gently exercise their muscles, teach them about social interactions, and help you to have fun together. Get started with a couple of examples.
International Neuromuscular Disease Websites
People from all over the world suffer from neuromuscular disease, and need to find accurate, appropriate, and effective information, support, and services. This article lists some of the web-links to organizations that serve the worldwide neuromuscular diseases community.
Journal Writing and Neuromuscular Disease
While the benefits of personal writing have been well documented, some people find it difficult to get started. To help you, I have provided a few journaling prompts about the experience of having a neuromuscular disease to help you begin journaling.
Journaling for Wellness
Journaling can help you to reach greater self-awareness, process emotions, and improve your overall health and wellness. Find out about personal writing in this article.
Kayaking with Neuromuscular Disease
According to the American Canoe Association (ACA) and United States Canoe Association (USCA), kayaking and other paddle sports can be adapted to accommodate individuals with a wide range of physical disabilities.
Keeping a Gratitude Journal
As I have dealt with my diagnosis and symptoms of neuromuscular disease over the past few years, sometimes my emotions have given way to worry or despair. When I begin to despair, one of my most useful tools is prayer, often in the form of keeping a gratitude journal.
Learning through Neuromuscular Disease
Recently, I had the opportunity to speak on behalf of the Muscular Dystrophy Association to children walking to raise money. I found that I had much to tell these children, not just about neuromuscular disease and the MDA, but about coping and thriving despite life’s struggles.
Legislative Advocacy and Neuromuscular Disease
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.
The hobby of “letterboxing” has been growing. It involves hiking and navigational skills, with the fun of finding a “treasure” at the end of the hike. Trails can be selected by level of difficulty and wheelchair accessibility, making this a great hobby for individuals with neuromuscular disease.
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