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g Neuromuscular Diseases Site

BellaOnline's Neuromuscular Diseases Editor

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“It’s Not Fair!” – Coping Spiritually
No, life is not fair: however, the more I focus on what I perceive others have that I do not have , the more unhappy and envious I become. I could easily allow myself to lose my joy. My antidote comes from focusing on prayer and gratitude to God, most often through my journaling.

21st Century Cures Initiative - Update
21st Century Cures, an important initiative at the U.S. federal level, was formed to find ways to accelerate the discovery and delivery of medical treatments for disease. Read about the newest developments regarding this bill.

39 Pounds of Love Documentary Review
The Documentary 39 Pounds of Love provides viewers a rare glimpse at a life well lived despite severe disability. This documentary follows the cross-country travels of Ami Ankilewitz, a 34 year old man with a rare form of the neuromuscular disease SMA/2 (spinal muscular atrophy).

A Teacher’s Guide to Neuromuscular Disease Review
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, A Teacher’s Guide to Neuromuscular Disease will help answer these questions for teachers and parents.

Abilities Expo 2015
At the Abilities Expo, I had the opportunity to learn about the many products, services, and non-profit organizations that serve those with physical challenges, including those with neuromuscular disease. Admission to the Abilities Expo is free.

Accessibility at Disney’s Magic Kingdom
Overall, Walt Disney World’s Magic Kingdom was accessible, and Guest Services was helpful. The Guest Assistance Pass helped me to reduce waiting in lines. The park did require a great deal of walking and standing, however, and my comfort would have been greatly increased had I used a wheelchair.

Accessible Voting in the U.S.
Voting in elections remains a fundamental right, privilege, and responsibility for each U.S. citizen. In the past, polling places were not always easily accessible to those with mobility issues or other disabilities. Today, federal laws require that polling places be accessible.

Acid Maltease Deficiency (AMD)
Acid Maltease Disease (AMD), which is also called Pompe Disease, leads to progressive weakness of the mucles in the hips, upper legs, upper arms, and respiratory system. The infantile onset form also affects the muscles of the heart.

Airport Security and Disability
Going through airport security checkpoints can be daunting, especially when mobility issues make assistive devices necessary. Learn about how the Transportation Security Administration (TSA) has anticipated these needs and has made provisions for screening individuals with mobility issues.

ALS Association Webinar Series
The ALS Association offers webinars on a variety of topics regarding to research and care services related to amyotrophic lateral sclerosis (ALS). Each webinar features top researchers, specialists, and care providers. Interested individuals can attend a current or archived webinar at no cost.

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