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.
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