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Nonprofit Overview

Causes: Health, Human Services, Neurology & Neuroscience, Personal Social Services, Philanthropy, Specifically Named Diseases Research

Mission:

American Dystonia Society (ADS) is dedicated to advancing Dystonia research, promoting patient advocacy and increasing public awareness of this debilitating disease. Our top priority is to maximize delivery of donations and grants to fund Dystonia Research 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.

Programs:

The concerns with Dystonia support groups have been with frequency and relevancy. Our support netwok addresses these issues by holding one hour sessions at least every other week. The three or more months between meetings, typical of more traditional format support groups, is too long between meetings, especially when one of the biggest issues for Dystonians' is being alone and isolated. Travel is also an issue, with many people living as far as 2 hours or more from the closest support group. Many of us cannot drive let alone travel comfortably in cars. By making the support groups teleconference and internet based, there is no need to travel nor impose that demand on friends and family. For those who find it easier to type than talk, we will have a chat room available for some meetings.

The relevancy of discussions offered at traditional support groups will be addressed. Some people have sat through meetings that were irrelevant to their needs.  We will have a full range of topics relevant to the Dystonia Community and patients participate only in the ones of interest.

Donor & Volunteer Advisory

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Disclaimer

GreatNonprofits, as an impartial aggregator of reviews, takes no position on allegations made or issues raised by third parties. However, donors and volunteers can read recent news about this organization and determine for themselves whether such information is relevant.

Community Stories

12 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

American Dystonia Society, Inc. is a great organization serving those with various forms of dystonia. I have found their forum site especially helpful as well as the cards they provided me that explain the disease in simple terms for associates who find the medical explanation too challenging. I am impressed with the energy, honesty and unselfish support offered round the clock to dystonia sufferers by the organization. Kudos to ADS!

General Member of the Public

Rating: 5

I am glad the American Dystonia Society, Inc. is raising awareness in proper diagnosis and treatment for this disease. The more the general public and doctors know about this disease, hopefully one day a cure will be found, but I am sure much help is needed.

Volunteer

Rating: 5

The American Dystonia Society provides great information and support for both the newly diagnosed and "veterans" of this weird and difficult disorder. Ultimately, as the organization matures, it hopes to make significant headway in finding better treatments and maybe even a cure for the condition. Having had Dystonia for over 25 years, I only wish that they American Dystonia Society (founded 2009) had existed earlier!

Whether it is tips on day to day coping, finding the best doctor or medication, considering new treatments, applying for disabilty, advocating for more awareness, raising money to directly finance research, or representing Dystonians to the medical community ADS is there. It is a young organization but has accomplished a lot in just a short period. It is especially noteworthy in being operated completely by volunteers and being incredibly efficient with its resources.

My constructive feedback to ADS is to be sure not to spread itself to thin and thus dilute its efforts. In my mind, the greatest service it can give the Dystonia community is access to better treatments or medications (existing options come with significant limitations or untenable side effects).

General Member of the Public

Rating: 5

I hadn't heard of dystonia until I was recently diagnosed. Like most individuals today, my first resource for inofrmation was the internet. Thankfully, my internet search resulted in finding support and information from the American Dystonia Society.

I am so thankful for the helpful and useful information the Society has provided. When I was first diagnosed I was scared and confused, and the Society provided me with the resources, help and support I needed. The members of the Society provided me with information on treatment options, medications, and also tools to help with the pain and discomfort associated with the disorder.

Client Served

Rating: 5

I have alway received support, and encouragement from the American Dystonia society. They care more about the patient, than some of the other dystonia organizations. It is a horrible disorder to have, however the society helps a lot.
Angela

Client Served

Rating: 5

When I first came down with dystonia in 2009, the ADS was there for me. My family didn't understand the disease and the doctors were confused and prescribing incorrect meds making things worse. ADS never asked for money, didn't pitch, or prod for anything. The members and staff just wanted to help me learn about dystonia. This organization is the guardian angel's network for dystonians like myself.

Nora C.

Board Member

Rating: 5

ADS has raised a huge amount of awareness about dystonia for dystonians and the society in general.It has gave me the opportunity to connect with a lot of dystonia suffering people around the world.I've been able to raise awareness in other countries through the foundation and help people for real.I don't know about any other dystonia foundation that has accomplished that before.

Lee P.

Client Served

Rating: 5

Since being diagnosed with Cranial/Cervical Dystonia, I have come to rely on the ADS as a constant source of information and support. I have also recommended it to other Dystonia patients,family members and friends, so that they are able to participate in the forums, plus gain valuable knowledge about this debilitating condition.

Renee P.

Client Served

Rating: 5

5 years have passed since I first had the symptoms of Dystonia. My neurologist continually said I had a seizure disorder. But the activity in my brain came back normal. I finally left that neurologist three years ago and found another one. That is when I found out about American Dystonia Society. It is the best place to be encouraged because others know exactly where you are coming from. They have the same problems as you and have been there done that. The ADS educates people brings them out of their shells, because many of us are immobile. We cannot go out as normal -people do. Also they provide literature free of charge to people with this illness. They are a great support when no one else seems to know what to do!

Ginny B.

Volunteer

Rating: 5

American Dystonia Society created a community that I had yearned for since feeling more and more isolated with dystonia. This past year, after experiencing progress many members offered comfort, advice, and words of encouragement through on line chats and often also gave the outlet to laugh which can be some of the best medicine. Through American Dystonia Society, I learned that others had been going through the same symptoms and experiencing mis diagnoses and feeling isolated and through this community, we came together to realize together we are strong and never along in dominating dystonia. We have come together to share stories, to encourage, to be positive, to keep our hope and spirits alive on our darkest and most painful days. If we can not literally speak or get out, we can type and know we have support on the other end. We have also come together as a community to Daisie awareness about our own unique experiences with dystonia and also about the disorder to our own respected literal communities. We have met one another, laughed, walked with our crooked chins together, cried together. And also, literally united for our first of many funraisers. We have created awareness and a community through all media sources and created brochures, teeshirts, pens, and will walk united to create dominance over dystonia.