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BellaOnline's Neuromuscular Diseases Editor

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The Ensuring Access to Clinical Trials Act
The Ensuring Access to Clinical Trials Act of 2015 was introduced in to U.S. legislators. If passed, this Act would make the Improving Access to Clinical Trials Act of 2009 permanent, removing financial barriers for individuals receiving SSI or Medicaid to participate in clinical trials.

Letterbox Hiking
Who doesn't love a treasure hunt? Letterboxing 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.

Charcot Marie Tooth Disease (CMT)
Charcot Marie Tooth – A funny name, but for the estimated 2.6 million people worldwide who have CMT, including myself, it’s no laughing matter. Charcot Marie Tooth actually refers a group of genetic diseases that affect the peripheral nervous system.

Orthotic Management of CMT Resource Review
This special issue of Lower Extremity Review, Orthotic management of CMT: Dynamic solutions for active lifestyles, covers a variety of topics related to proper orthotics and bracing for individuals with Charcot Marie Tooth (CMT).

How to Start Balance Walking
Learning to use Balance Poles for exercise correctly is important, but not difficult. Along with providing significant health benefits over walking without poles, this form of walking is fun and easy to learn.

Balance Walking and Neuromuscular Disease
Balance walking (also called Nordic walking, walking with poles, or walking with trekking poles) offers many health benefits. Recently, Krin Patrie, Director of Balance Walking, spoke with me about the benefits of walking with poles, including the benefits for people with neuromuscular disease.

Social Networking and Neuromuscular Disease
Social networking has made connecting with others easier than ever. Interacting through social networks may be especially helpful for those who have significant disability which limits their opportunities to interact with others in person, including many people with neuromuscular disease.

My Family Health Portrait 3.0 Resource
The My Health Family Portrait tool can help you map out your family health history. Available online, this tool is simple and easy to use. You may find this tool to be useful for communicating this important information to your health care providers.

CMT Exercise Video Series from the CMTA
The Charcot Marie Tooth Association (CMTA), has been producing a series of short instructional videos demonstrating physical therapy exercises for individuals with Charcot Marie Tooth. Currently 4 of these videos are available at no cost at the CMTA website, with an additional 3 videos planned.

Clinical Trials and Neuromuscular Disease
Clinical trials involve experimental research in order to find more effective treatments and/or cures for disease. By becoming involved in research, whether as a participant, or through fundraising and advocacy, you can help to support ongoing research efforts in neuromuscular disease.

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