March 2010 Set for Launch of American Dystonia Society's
Innovative National and Internatiional Support Groups

With key people now in place, American Dystonia Society is set to embark on one of its primary missions. In March 2010, we will be launching a new National Dystonia Support Network. We have heard from a lot of people about existing support groups and how they could be better. We have listened and designed a revolutionary support system to address the Dystonian's needs.

One concern has to do with frequency. Our support netwok addresses this issue 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.

Another concern is the relevancy of discussions offered at traditional support groups. Some people have sat through meetings that were irrelevant to their needs. For example, a few meetings were described to us as "Medtronic sales pitches disguised as DBS presentations." (quotations needed?) We will have a full range of topics relevant to the Dystonia Community and you participate only in the ones that interest you. As of now, we plan to have the following groups meet as permanent regular support groups: Marriage, Romance, Dating and Intimacy Discussions; Caregiver Support; Parents with Dystonia; Veterans with Dystonia; and Applying for Disability.

We are also addressing the need for Dystonians to have support groups for their type of Dystonia. We plan to have groups for CD, OMD, Blepharospasm, Genetic Dystonias, and Generalized Dystonias. We will regularly discuss topics such as medications/side effects, Botox, and DBS, providing opportunities for you can ask others directly about their experiences with such treatment options.

Another issue with Dystonians is the cost factor, travel is relatively expensive if you are 20 plus miles away from the support group. To keep our overhead low as we promised, we can't provide toll free numbers; however, we will hold the teleconferences on weekends when cell phone service is often free. Many people now have unlimited weekend long distance on their home phones. For those who don't, AT&T and Verizon long distance is 7 cents a minute or $4.20 per hour which is cheaper than the cost of a round trip to a meeting 20 miles away. And we don't cancel for snow unless the moderator's phone lines are out.

Finally, we will have opportunities to meet with the people that have been behind the scenes advocating for you: you can meet with people like Beka Serdans of Care 4 Dystonia, Rebekah Willis of Dystonia Living, Dawn Brinkley, a Dystonian competing in the Mrs North Carolina pageant, and others who have coped with Dystonia while doing amazing things and increasing awareness. We will invite leaders of the other foundations to talk about their goals and aspirations, Rick Staab of Tyler's Hope will be invited and he can talk to you about their efforts with DYT1 genetic Dystonia.

2010 is an exciting year for us as we embark on our quest becoming one national community. We will have support groups for the patients and their families, not for the foundation.
These support groups have been formed with your interests in mind. If you have comments or suggestions for improving them or adding topics, please feel free to contact ADS by email or phone with your feedback, comments and suggestions. We very much look forward to having each and everyone of you at these support groups.