Editor's Note

Along with 4 other associations - Dystonia Medical Research Foundation, National Spasmodic Torticollis Association, National Spasmodic Dysphonia Association and the Benign Essential Blepharospasm Association, ST Dystonia will enter a new field of endeavor - the Legislative scene, specifically in Washington, DC.  Can we do anything?  We believe we can by banding together, yet retaining our individual identities. It needs to be done as other illnesses are doing a lot of lobbying and getting results. We need our fair share of the pie; in fact if you look back in time as to what we haven't received because no one knows of dystonia we have some catching up to do.  In this issue you will find an article and a blurb from the American Medical News.  Both are important for all of us to understand, especially the latter "blurb" as that determines how much a doctor will be paid for administering botox/myobloc to you.  What could be of increasing concern is what will happen to the amount of doctors injecting should Medicare keep decreasing the amount they pay.  And, then, what happens if they no longer OK it for outpatient or doctor's offices use?  Many questions.

On April 18th we encourage as many of you as possible to plan to come to Washington DC for 'A MARCH ON CAPITOL HILL' to voice our concerns to the various congressional offices.  By now you should have received our earlier letter on this subject. We will try and have something in each issue from now on as to what is happening in the legislative field and what you/we can do about it.

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