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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.
The hobby of “letterboxing” has been growing. It 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.
MDA's Art Collection
Through works of art, individuals express their experiences as individuals and as part of humanity. The works displayed in the Muscular Dystrophy Association Art Collection not only showcase the creative abilities of the individual artists but give a voice to those with neuromuscular disease.
MDA's Free Webinar Series
The Muscular Dystrophy Association (MDA) has produced a series of free live and archived educational presentations called the Public Webinar Series. Expert-led topics include a variety of important issues. Make time to attend a high quality educational presentation from your own home.
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