A dear friend and classmate of our founder posted this touching eloquent post on his timeline: Weve all seen awareness campaigns for diseases everybody already knows about and viral social media stunts for them that become quickly annoying and help nobody. However, there is a serious illness that affects many people that few folks have ever heard of and its called dystonia. Dystonia is a very complex, highly variable neurological movement disorder characterized by involuntary muscle contractions or spasms. Dystonia is not rare. It is actually the third most common problem seen in movement disorder clinics. But because of its many different and very often unusual manifestations, it is frequently misdiagnosed. Dystonia is not well known, it is even less understood, and yet nearly a third of a million Americans have been diagnosed with it. Even more are mis- or undiagnosed. The American Dystonia Society is working to make September Dystonia Awareness Month. The ADS, whose web site is dystonia.us/ , was founded by my college classmate and longtime friend Noel Valero, who is unfortunately afflicted with this condition. If you dont already know about dystonia or would like to learn more, take a look at the ADS web page listed above. If youre moved to donate, they are a 501(c)(3) tax-deductible organization and 100% of the net proceeds (minus on-line fees) of your donation will be used on Dystonia programs such as research, awareness, advocacy, and patient support. Absolutely no part of your donation will go towards salaries, office overhead, or consultants. You can see their GuideStar (a non-profit transparency web site) profile at www2.guidestar.org/PartnerReport.aspx?Partner=networkforgood&ein=27-1254291 . But beyond money, the ADS would very much also appreciate an easy and free touch of support! You can sign a White House petition to make September official Dystonia Awareness Month at https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz (I did! The deadline is September 30!) and you can further awareness on social media. That can be as easy as clicking Share on this post! Thanks for taking the time to read about this debilitating ailment and I hope you can take a moment to support efforts to promote awareness about this profoundly life-disrupting physical disorder. [Quotes are from ADS and Johns Hopkins Medicine.] #Dystonia #DystoniaAwareness #DystoniaPetition #DystoniaAwarenessMonth
Posted on: Mon, 15 Sep 2014 00:09:53 +0000
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