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Tales of a Shambassador
As area businesses again blossomed with green and gold Shamrock’s during February and March of 2015, I was again asked by my regional MDA office to act as a Shambassador. My duties include visiting area businesses that participate in the MDA Shamrocks program to say thank you.
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.
What is a Rare Disease?
Neuromuscular diseases are considered to be rare diseases. What qualifies the various neuromuscular diseases to be considered as rare?
International Clinical Trials Registry Platform
The World Health Organization (WHO) maintains an international registry of clinical trials. The International Clinical Trials Registry Platform (ICTRF) lets clinical researchers communicate their research efforts internationally through registering their clinical trials.
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.
Genetic Disorders Sourcebook Review
Overall, the Genetic Disorders Sourcebook is a useful reference. It contains much valuable information in a well-researched and easy to read format for individuals with inherited neuromuscular disease and/or other inherited disorders.
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.
MDA’s Shamrocks Against Dystrophy Program 2015
Each year, retailers all over the U.S.A. sell green Shamrocks and gold Shamrocks. The money raised through the Shamrocks Against Dystrophy Program funds research, education, summer camps through the MDA. In 2014, Shamrocks raised $21 million!
Roussy-Levy Syndrome, also known as hereditary areflexic dystasia, affects the peripheral nervous system. Distinctive characteristics of this variant of CMT include tremors (rhythmic shaking) in the hands and arms and unsteadiness of gait (gait ataxia).
Coping With Grief Over Health Losses
When I first received a diagnosis with a neuromuscular disease, I went through a variety of emotions. Looking back, I recognize these emotions as part of the grieving process.
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