American Dystonia Society, Inc.

Rating: 5 stars   12 reviews

Issues: Health, Human Services, Philanthropy

Location: 17 Suffolk Ln Princeton Juntion NJ 08550 USA

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.

2011 Top-Rated Nonprofit
Write a Review
Invite people to share their experience with this nonprofit!

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Community Reviews

Rating: 5 stars  

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!

I've personally experienced the results of this organization in...

Using their forum, cards for distribution to further awareness, bracelets, books and personal email.

If I had to make changes to this organization, I would...

try to get the word out that they are available to help. More people need to be aware of this agency, one of the few true supports for dystonia in all its forms.

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Having a dear friend that was diagnosed

If I had to make changes to this organization, I would...

If I could, I would donate as much money and time that I was afforded.

Was this review helpful? 
Rating: 5 stars  

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).

I've personally experienced the results of this organization in...

For me, getting to know other people with Dystonia and share with them has really helped mitigate the isolation associated with having such a debilating condition.

If I had to make changes to this organization, I would...

Now that the organization is more mature, I hope it can really begin to do some fundraising and move research for better treatments (or cure) foward, thus building on its support and awareness efforts. With this in mind, I expect it will need to grow in terms of its volunteer base. It may even require some sort of staff at some point. Some planning for this may be in order.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

What one change could this group make that would improve your volunteer experience?

Focus and follow through.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Yes, absolutely. Very much a personally affirming and growth experience. I have used my existing skills, learned new ones and made some great friends.

How did this volunteer experience make you feel?

Energized. Empowered. Engaged. Appreciated. More hopeful.

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

This organization has helped me cope with the pain, and discomfort of this disorder, as well as the social diabilitation. It has allowed me to keep in touch with others who experience the same struggles and demons I deal with on a daily.

If I had to make changes to this organization, I would...

None

Was this review helpful? 
Rating: 5 stars  

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

I've personally experienced the results of this organization in...

Yes I have received a book to help me understand this disease, and information on how to deal with it.

If I had to make changes to this organization, I would...

none

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

evaluating my own medical treatments. Through their on-line chats and telephone chats I learned what to expect when doctors would not take the time to tell me. ADS doesn't provide intervention, they help educate you so that you can make good decisions and find good medical care.

If I had to make changes to this organization, I would...

ask every doctor with a dystonia patient to refer that patient to ADS.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

On-line research.

What, if any, change in your life has this group encouraged?

Fully understanding the disorder and helping others to set their expectations.

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Sure! ADS has provided me with a lot of resources in order to work for the dystonia community

If I had to make changes to this organization, I would...

Is very well oriented already!

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

I have submitted questions and concerns, about health and emotional issues, to this organisation, and have received prompt and supportive advice.

If I had to make changes to this organization, I would...

The American Dystonia Society supports members from all around the world - the word is gradually spreading, but more can always be done in this area. Facebook and Twitter are a great way to spread the word!

Was this review helpful? 
Rating: 5 stars  

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!

I've personally experienced the results of this organization in...

Keep this organization growing and well publicized! They are doing a great job!

If I had to make changes to this organization, I would...

Publicity and Local chapters would be great!

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

United many of individuals with dystonia and their friends and family members to be a team and create awareness which also created donations for research. Uniting together keeps us internally strong so we do not feel alone or isolated. We also learn coping skills and ways to help ourselves, each other, our loved ones, and our community to dominate and win over dystonia with courage as dystonia can be extremely painful, isolating, challenges the ones affected to think outside of the box to keep hope alive.

If I had to make changes to this organization, I would...

Continue to expanding volunteers to take leadership roles and to expand awareness, research and community to keep hope that with awareness will come the scientific resources to help allieviate the debilitating symptoms of dystonia and someday find a cure...but right now, support and awareness are key in helping to keep strong and learn and lean on each other for support to bring questions to our doctors and friends and family in how they can best support our needs to win the daily tug of war battles for al

Was this review helpful?