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ADS fan

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Review for American Dystonia Society, Inc., Princeton Juntion, NJ, USA

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?


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


Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?


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?


Role:  Volunteer & Assisted with early planning and development of organization. Did research for, edited and wrote for website. Participated in discussion groups, offering insight of veteran with the disorder. Very active in ongoing planning, writing and research for the.