American Dystonia Society

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 more 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.

Dystonia on-line petition to go live September 1, 2014

September 2014 Marks the First Unified Dystonia Awareness Month and We Seek official White House Recognition

Throughout the month of September, we are asking everyone to sign an on-line petition through We, the People that urges the White House to support government recognition of September as Dystonia Awareness Month in the USA. We need 100,000 signatures to guarantee White House support. We will post the link here on September 1 so please come back in September to sign.

How does it work?

It's very simple, just click on the link and enter your name and e-mail address. Submit and verify your signature by clicking on the link in an email you will receive shortly. This is an important step since your signature will not count unless you verify it.

Are you just collecting e-mail addresses?

No, We, the People is a US government site and we do not get any information from the petition.

How old do I need to be in order to sign?

You have to be at least 13 years of age

Do I have to be in the USA or be a citizen?

No, anyone who can access the link can sign.

American Dystonia Society Achieves 98% Pass-Through of Donations and Grants in 2010-11

In only its second full year of operation, American Dystonia Society has released its 2011 IRS 990 filing. The return can be viewed in PDF format by clicking here. For 2011, 100% of all donations made above ADS's minute overhead costs went to dystonia programs such as patient support, awareness efforts, advocacy efforts, and research. ADS helped fund stipends to send young dystonia researchers to scientific conferences. ADS also helped fund the establishment of the first ever Global Dystonia Patient Registry. We thank everyone for their continued support.

Upcoming Events

September 01-30, 2014, First September is Dystonia Awareness Month
September 1-30, 2014, We, the People dystonia petition
September 18, 2014, Orange Flash Mob for Dystonia Awareness outside The Today Show
Dystonia Awareness Night with the New Jersey Devils NHL Team

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

© American Dystonia Society "Reflections" photo available from dystonia.photoreflect.comThe American Dystonia Society’s (ADS) operational goal is to increase total 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.



image 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.



imageAmerican 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.


imageAbout 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.



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American Dystonia Society raises awareness at a MLB game

Julie battled Dystonia to complete her degree

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The information on this Site is provided for general informational purposes only and is not intended or recommended as a substitute for professional medical advice. Always seek the advice of your physician or other qualified health care provider regarding any medical condition or treatment.
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