Monday, March 4, 2013

Join Us for Dystonia Advocacy Day

It may feel in some areas of the country that spring will never come this year.  So many are dealing with mounds of snow and cold temperatures – it’s hard to be able to overlook all of that and think about any spring activity.  We hope you will be able to look beyond all that snow and look to an exciting spring program: consider joining with other dystonia advocates to educate Members of Congress about dystonia and ask them to help us meet the needs of this community.

Dystonia Advocacy Day is just one of the many things we do with our advocacy program every year.  It happens every spring in Washington, DC. Because of the many tireless advocates that have participated in years past—and the added efforts of dedicated advocates throughout the year—the dystonia community has had researchers funded through the Department of Defense Peer Review Medical Research Program, allowed for easier access to all FDA approved treatments for dystonia, and joined with other organizations in calling for increased funding for the National Institutes of Health and for appropriate reimbursement for physicians.

The dates this year are April 30 - May 1st.  We will do an orientation for new advocates on April 30 and give you an overview of what to expect. Then there is a briefing for all advocates later that afternoon.  The day is topped off with a dinner—giving you a chance to meet with other advocates.  People are put into teams so no one has to go into a meeting alone.  All advocates are sent materials in advance,  and we prepare packets filled with specific information on what we are asked Members of Congress to support.  You don't have to worry about becoming a legislative expert –it’s your story that makes the difference and makes dystonia real for legislators and their staff.

If you are interested, please consider joining us.  Once we receive your registration, you will get an email confirming that you are registered.  We will ask you what hotel nights you need, if you have dietary restrictions, etc.  We will make your hotel reservations and send you your hotel confirmation number.  You will be sent materials in advance of arriving in Washington, DC to review so you will be prepared for the orientation and briefing.

We hope you will be able to participate this year.  It is such an important activity.  Click here to register for Dystonia Advocacy Day.

If you have questions, please contact the office at or 312-755-0198.