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Be Part of the 2020 Dystonia Virtual Advocacy Day
March 10, 2020

Become a dystonia advocate.  Help make a difference for all affected by every form of dystonia by joining us for a virtual advocacy day on March 25th.

The Dystonia Advocacy Network’s Advocacy Day that was planned for March 24 and 25 in Washington, D.C. has been cancelled because of the current situation with the COVID-19 (Coronavirus) outbreak.    

The health, safety and well-being of our advocates and all members of the dystonia community is extremely important to us.  The decision to cancel was not easily made but the situation with the virus is changing quickly and there is no way to predict how or if it would areas where our advocates would be traveling from. 

However, the dystonia community will not the Coronavirus threat keep us down! Help us spread the word to Members of Congress – increase their awareness of dystonia and how they can help us. Please join us in this effort and participate in our virtual advocacy day planned for March 25 – the same day our advocates had planned to storm the Hill! It will be easy, something you can do from the comfort of your home or office and depending on what you do – it will be quick! 

We will provide you with the information to do any or all of the action steps listed below:

  • Email your two Senators and your Member of the House of Representatives to share your experience with dystonia and to ask them to help us (information on the ask to be provided)
  • Call the offices of your two Senators and your Member of the House of Representatives to share your experience with dystonia and ask them to help us (information on the ask to be provided)
  • Schedule a meeting in the local offices of your Senators and Member of the House of Representatives to share with them your dystonia experience and ask them to help us (information on the ask to be provided)
  • Then join us for a Zoom, on-line meeting to debrief on your experiences throughout the day.  Let’s come together virtually to talk about who was receptive and what next steps might need to be taken.

Please plan to join us for a planning webinar on Thursday, March 19th webinar at 4:00 pm ET.  The webinar will provide information on how to identify your Members of Congress, how to make an appointment in your elected officials’ local district offices; or what to say in your calls/emails to their offices.  To register for the webinar, please use the link below:

https://register.gotowebinar.com/register/1071763658117986315

Come join the dedicated volunteers who advocate for the dystonia community and have your voice be heard on important issues like funding for research, creating research funding opportunities through the Department of Defense Peer Review Medical Research Program and the preserving pre-existing condition protections. We need your energy and efforts!