What is Dystonia?
Debilitating pain and/or compromised muscular function are the common symptoms of everyone suffering from Dystonia. Dystonia can strike at any age, from birth and infancy to well into adulthood. Dystonia can be caused by genetic mutations, reactions to drugs, or traumatic brain injury (TBI). TBI can be a mild concussion, mild to severe head trauma such as those suffered in an auto accident or other severe incidents, any brain injury as a result of stroke, aneurysm, carbon monoxide poisoning, brain infection (such as encephalitis or meningitis), or complications from neurosurgery.
Dystonia is a hyperkinetic movement disorder which manifests itself broadly and often makes accurate diagnosis difficult. It may be characterized by rapid, jerky movements/spasms or sustained postures or subtle symptoms like twitches, tics, vocal changes, or tremors. It is sometimes confused with the widely known Parkinson's Disease, which is a hypokinetic disorder, characterized by slow movements.
Without a cure or universally effective treatments, anyone diagnosed with Dystonia faces major life struggles for the patient and loved ones. Often accompanied by extreme pain and/or disability, a Dystonia patient faces a lifetime of ongoing medical care for those lucky enough to respond to treatment.
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American Dystonia Society Mission Statement
American Dystonia Society (ADS) is dedicated to advancing Dystonia research by promoting patient advocacy and increasing public awareness of this debilitating disorder. Our top priority is to maximize delivery of donations and grants to fund Dystonia Programs in order to realize a cure and develop more effective diagnosis/medication/treatment protocols for Dystonia. ADS is dedicated to improving the quality of life for a person living with Dystonia.
American Dystonia Society Philosophy
The American Dystonia Society’s (ADS) operational goal is to increase foundation funding for Dystonia research to critical mass of $25M per year by 2020. Because ADS has demonstrated its ability to operate with razor thin overhead which are covered by the directors, ADS is able to guarantee a 100% fiscal commitment of all other donations to advocacy, awareness, support, and research.
We maintain a virtual presence to keep expenses extremely low. ADS Board Members maintain home offices which eliminates the need to lease office space and associated office expenses.
ADS makes use of available 21st century technology to reach the general public and the Dystonia Community. We eliminate the costs of conferences and symposiums and the associated costs of travel.
ADS will NEVER require membership dues or fees from Dystonia patients who have sizable medical expenses. We will NEVER solicit donations from those we seek to help. ADS will NEVER make a profit in sales of any awareness or support materials from the community it aims to support.
We will constantly seek new levels of efficiency, collaboration, & growth.
Our Board of Directors is an all-volunteer diverse group of individuals with Dystonia working together toward a common goal.
Our Medical Board boasts some of the top movement disorder neurologists, neuroradiologists, and neurosurgeons but will include primary care physicians to help strategize how frontline caregivers can speed up the Dystonia diagnosis, sparing months or years of pain .
ADS will recognize local affiliates' need to raise funds for medical research or local patient support. ADS will ensure that local sections' needs to support patients take precedent over our national goals.
Fortified with an empathetic sensitivity and dissatisfied with the continuing difficulties of diagnosis and treatment; the Society shares the Community’s passion for common goals. ADS will honor and advance each effort towards a marked acceleration in applicable research without preference for a particular type of Dystonia.
The American Dystonia Society aspires to be accessible, practical, relevant, and compassionate; mentoring the newly diagnosed and long term Dystonians in need. Additionally, ADS intends to aid Dystonians through the eventual designation of needs based personal grants raised through local fundraising.
ADS is fiscally responsible to its benefactors, donors, and the Dystonia Community. Regular financial reports will be published on this web site as well as all IRS filings. Expenses will be individually itemized to provide 100% transparency into its operating costs. All expenses will be thoroughly documented. ADS will release all 990 filings immediately. To view our IRS 2010 990 Filing, click here.
American Dystonia Society is a member of the Dystonia Coalition, an international consortia of Dystonia patient advocacy groups, research centers, and clinical centers of excellence, dedicated to dystonia research. Click on the Dystonia Coalition logo on the immediate left to visit their site.
American Dystonia Society is more than a foundation. It is a society of Dystonia patients, caregivers, loved ones, and medical practitioners who provide mutual support for each other. ADS recognizes the diversity of the disorder and everyone it affects. It is a foundation powered by the caring and compassion of its members, all of whose lives have been affected by Dystonia.
About the Artwork This was painted by Deb Friedson, a fellow Dystonian, who can still paint wonderful works of art. This one particular piece captured the spirit of many people with Dystonia. On the full sized print, which is available at our photo store, many names of members of the American Dystonia Society are written as well as many of the desires of Dystonia Community. Many Dystonians have related to this artwork and has served to be ADS's symbol and rallying point for many in the Dystonia community.