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Kyphosis in Neuromuscular Disease
Kyphosis is a type of abnormal spinal curvature that causes the spine to curve excessively, causing a bowing or rounding. This leads to a posture that appears to be slouching or ‘hunchbacked.’ Curvature in the spine in individuals with neuromuscular disease usually affects the whole spine.
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.
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.
Like a Flower Grows Volume 3 Launch
Like a Flower Grows, Volume 3 includes devotions about coping with the neuromuscular disease Charcot Marie Tooth (CMT). I hope to educate readers about this little-know hereditary peripheral neuropathy while sharing my spiritual journey and the connection between scripture and everyday life.
Maintaining Self-esteem Despite Differences
Maintaining self-esteem despite the physical disabilities and differences caused by neuromuscular disease can enable one to make a difference in the world.
Managing Caregiving Stress
Caregiving stress should be taken seriously and, left untreated, can lead to caregiver burnout. While the demands of caregiving may lead to stress, recognizing and taking action to manage caregiving stress will benefit the well-being of both the caregiver and the care receiver.
MDA SHOW of STRENGTH 2014
In it’s 49th year, the 2014 Telethon broadcast will again use MDA SHOW of STRENGTH as its title. This year, the show will run on Sunday, August 31, for two hours from 9:00 p.m. to 11:00 p.m. ET. The MDA Show of Strength Telethon will run exclusively on the ABC Television Network.
MDA Summer Camps
Without specialized MDA camps, many children with neuromuscular disease might never have the opportunity to attend a summer camp, as most summer camps are not equipped to handle the specialized health needs and appropriate adaptations in activities for a child with neuromuscular disease.
MDA Transitions Center
The Muscular Dystrophy Association Transitions Center focuses on the needs of teens and young adults with neuromuscular disease. Launched in 2011, this site offers support, information, and resources targeting this group while also raising awareness of the challenges this group will experience.
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