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The CMT Survivor's Guide
The Charcot Marie Tooth Association (CMTA) recently published a new resource for individuals who have been diagnosed with Charcot Marie Tooth (CMT) titled CMT Survivor’s Guide: a resource guide for living life your way.
The Rare Clinical Diseases Research Network
According to the Rare Clinical Diseases Research Network (RDCRN) website, the purpose of the RDCRN is to increase collaboration between the research and treatment efforts of the scientists and clinicians working with many different types of rare disease.
The Teacher’s Guide to Neuromuscular Disease
Both teachers and parents will have many questions about how to best support a child with neuromuscular disease in the classroom. Available free from the MDA website, The Teacher’s Guide to Neuromuscular Disease will help answer these questions for teachers and parents.
The Upside of Down Times Book Review
Last week, I found something to be grateful for when a copy of The Upside of Down Times by Lisa Ryan arrived unexpectedly in the mail. Eagerly, I devoured this book in less than a day, and renewed my commitment to keeping a gratitude journal, and to showing my gratitude to others.
Translational Research and Neuromuscular Disease
Translational research into neuromuscular disease focuses on taking basic research advances and ‘translating’ these results into usable therapies. Researchers are increasingly finding applications for basic research to the diagnosis, progression, and treatment of neuromuscular disease.
TSA Card Available for Travelers with Disability
While traveling through security checkpoints with a disability may not be easy, clear communication with the TSA Officers regarding one’s disability will simplify the process. The new TSA Disability Notification Card may make moving through airport security a little bit easier.
TSA Cares Helpline for Travelers with Disability
The Transportation Security Administration recently announced a new helpline dedicated to helping travelers with disabling conditions or medical issues called TSA Cares. This helpline was created to answer question regarding security screening for individuals with medical needs and disability.
Tuesdays with Morrie Book Review
While the book Tuesdays with Morrie: an old man, a young man, and life’s greatest lesson, by Mitch Albom, tells the true story of Morrie’s Schwartz’s illness and death, this book teaches as much about life and living well as it does about dying with dignity.
U.S. Legislative Update for Neuromuscular Diseases
Currently, important legislation affecting the neuromuscular disease community in the U.S. remains under consideration. As members of this community, it is important to remain informed about this legislation and to act in support of any legislation that is important to you.
Using a Cane
"Your cane looks good on you,” a friend recently told me. Surprised, I searched his face to determine if he was joking. Since injuring my hip recently, I have used a cane when necessary. Delivered to my hospital room, the cane is not fancy or decorative, but basic and functional.
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