It seems hard to believe that we are already in the middle of January. The holidays are nothing but a faint memory now – hope your season was a good one. I want to thank everyone for their hard work and support last year. We could not do what we do without you and your efforts have helped us off to a great start in this New Year.
The first good bit of news is that two dystonia researchers have been funded through the Department of Defense Peer-Reviewed Medical Research Program. Cris Bragg, PhD (pictured) and Kathleen Sweadner, PhD will receive funding for their work through this program. We offer our congratulations to them and to the many Dystonia Advocacy Network volunteers who have worked so hard over the past many years to get dystonia included on the list of eligible disorders so that our researchers could apply for this funding. We are also able to begin the year with gratitude to the Centers for Medicare and Medicaid Services for issuing a temporary billing code for the recently approved botulinum toxin, type A, Xeomin®. This means that dystonia-affected persons will have access to all FDA approved treatments because now doctors who might have been reluctant to use this new treatment because of potential billing hassles will have those hassles removed. We want to thank the CMS staff for their receptivity to hearing the patient’s perspective on this issue and again thank the DAN volunteers who made visits to Members of Congress in August and who went to CMS to provide personal testimony. The collaboration of the DAN organizations is to be celebrated as we are moving forward to meet the needs of those affected by dystonia.
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