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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 Act Signed Into Law
The 21st Century Cures Act has been signed into law. This Act provides funding for medical research and allows new treatments to reach those who will benefit more quickly. As a member of the neuromuscular community, I remain hopeful for new treatments and cures for neuromuscular disease.
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 2017
At the Abilities Expo, you will have 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.
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.
Amotrophic Lateral Sclerosis
Amotrophic Lateral Sclerosis (ALS) is one of the motor neuron diseases. It affects the muscles of the legs and arms, throat, and mouth, and eventually involves all of the voluntary muscles, affecting eating and respiration, causing paralysis leading to death. May is ALS Awareness Month.
Andreas and His CMT Challenge
Although Andreas Johansson suffers from the progressive neuromuscular disease Charcot Marie Tooth (CMT), he has not let that stop him from pursuing his dreams. Coming to the United States from Sweden, he embarked upon a trek across the U.S. on an EliptiGO, a self-powered eliptical style scooter.
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