Monday, June 27, 2011

Dystonia Advocacy Day and beyond

The fight to make sure dystonia we leave no stone unturned in securing support for dystonia research continues. Last month over 120 advocates went to Washington, DC to ask Members of Congress to support our request to have dystonia continue to be on the list of conditions eligible to have our researchers apply for funding through the Congressionally Directed Medical Research Program managed by the Department of Defense. Last week, Dee Linde – a DMRF and BEBRF volunteer provided testimony before the Senate Defense Appropriations Subcommittee to ask for their support. Dee, a former Navy petty officer, provided dystonia information to the Subcommittee members – appealing to them to help us learn more about dystonia so that we might be able to reduce or even eliminate the suffering of returning military personnel who, because of a traumatic brain injury, might be at risk for developing dystonia. The work of the Dystonia Advocacy Network members continues well beyond Advocacy Day and this is just one example of these efforts. Many thanks to Dee for sharing her personal story with the Senators present and to everyone who is working to keep the pressure on!

Monday, June 13, 2011

Dystonia Awareness Week Reflections

Increasing awareness of dystonia is an ongoing challenge but with the continued efforts of this community – we will help people truly understand what dystonia is and how it changes lives. We’ve just completed Dystonia Awareness Week and we want to thank the many people who made a special effort these past seven days to tell their stories – to reach out and talk about dystonia. We are grateful to those of you who ‘tweated’ during dystonia twitter day on Tuesday of this past week, to those of you who have shared your stories by becoming a part of the Faces of Dystonia program, and to those of you who shared your story through the media – it all makes a difference! Whether you are telling of your experiences through a national outlet or while standing in line at the grocery store – you are giving selflessly so that others will learn about dystonia. Every effort counts. Congratulations on your good efforts. Let’s keep it up!