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Welcome
to the American Dystonia Society,
a 501(c)(3) Foundation for the 21st century and a member of the Dystonia Coalition
American
Dystonia Society (ADS) will turn the foundation world upside down. ADS is an all
volunteer foundation from top to bottom. We guarantee that at least 90% of all
donations will go toward research and supporting awareness and advocacy. By using
21st Century tools, dedicated volunteers from the top down, and an innovative
business model, ADS will reduce overhead costs to unheard of levels for a research
foundation.
Dystonia is the 3rd most common movement disorder with an estimated 500,000 patients
diagnosed with primary and secondary forms of the diesease and possibly at least
another 1,000,000 others that are undiagnosed or misdiagnosed. Yet Dystonia lags
significantly behind in research funding when compared to other neurological disorders.
URGENT:
Join the effort to help make Xeomin, a newly FDA approved form of Botox-A,
be easily accessible to Dystonia Patients. It could be delayed until December
2012. 
American
Dystonia Society, the first 365 days in review 
Find
American Dystonia Society on Facebook 
Is
Dystonia Research Funding in Crisis? 
American
Dystonia Society to make first ever research oriented award

American
Dystonia Society launches social networking site dedicated to dystonia
Our
new site is a positively oriented peer support group with Support groups and discussions
dedicated to various topics relevant to Dystonia. With a 24x7 chat room, messaging,
individual pages, and awareness gift shop, the new site also keep the discussions
open and honest because it is separate from othe social networking sites such
as facebook and Myspace.
American
Dystonia Society releases first of regular financial transparency reports

As
promised, ADs is providing transparenciy into its organization. ADS is responsible
to its donors and members to be completely transparent financially.
American
Dystonia Society logo merchandise is now available. Wear ADS apparel in a variety
of mens, womens and childrens styles in your choice of colors and raise awareness.
Plus 10% of all proceeds are donated to ADS. 
What
does Dystonia look like?
Dystonia can take on many forms. It can incapacitate young children and make them
wheelchair bound or it can take the form of Blepharospasm which causes the eyes
to blink or close involuntarily. Spasmodic Dysphonia can affect the vocal chords
and make speech difficult and painful. Dystonia's most common form is Spasmodic
Torticollis/Retrocollis or Cervical Dystonia where neck spasms causes unusual
postures of the neck and trunk. It can be Writer's Cramp when only the hands are
affected; this is most noticeable in affecting musicians. There is Oromandibular,
or Jaw Dystonia, where the jaw stays open or clenches shut. What they all have
in common is incapacitating pain that prevents many patients from working. Dystonia
is an equal opportunity disease, striking infants to the elderly, men and women
of all ages, victims of head trauma such as accident victims and members of our
military who survive the Traumatic Brain Injuries (TBI) caused by accidents or
tools of terror like the concussion blast from an Improvised Explosive Device
(IED).
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