Battling Dystonia through Advocacy

An election year, with all the mud-slinging ads, has the potential to make us all a bit cynical about the democratic process.  However, the experience of dystonia advocates should make believers out of us.  The power of advocacy is clearly demonstrated through the work of the Dystonia Advocacy Network (DAN) organizations. This year alone the DAN has worked with other disease organizations on the important issue of changing the regulations allowing device companies with Humanitarian Device Exemptions (such as the company responsible for the hardware used in deep brain stimulation for dystonia)  to make a profit – critical to our attracting new companies to rare diseases. And this legislation has passed!  Our efforts to have dystonia included on this list of conditions eligible for application for federal funding of research continue, and this year dystonia has been included on the list emerging from the Senate!  This is now in a holding pattern because of the Federal budget situation and the Continuing Resolution – but this demonstrates the importance of dystonia advocacy.

We are now looking to have FDA be better informed about dystonia, and the DAN is inviting those affected by dystonia to share your story with the FDA through the patient-focused drug development initiative and help the FDA understand what our community wants relative to treatment. If you are interested, please go to http://dystonia-advocacy.org/actionalerts/ before November 1, 2012.

Advocacy is so important and it is a way to fight dystonia while our scientists battle it in the laboratories.  Please consider joining us for Advocacy Day next year scheduled for April 30 – May 1, 2013 in Washington, DC.  To learn more, please contact me at jhieshetter@dystonia-foundation.org

We have a great deal of work yet to do and we hope you will consider joining us next year.