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Take the 2018 DAN Insurance Survey
May 8, 2018

2018 Dystonia Insurance Survey The Dystonia Advocacy Network (DAN) is a collaborative effort of the Benign Essential Blepharospasm Research Foundation, the Dystonia Medical Research Foundation, the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association to address the policy needs of the dystonia community including policies that affect access to treatment. We are asking for your help to better understanding the current climate regarding insurance coverage of treatments for dystonia. All responses are anonymous. All of the responses will be compiled and a report will be written and utilized by the DAN to develop an action plan to address the insurance needs of the community. The survey is estimated to take 15 to 20 minutes and will provide information on your experience with getting your treatments reimbursed/covered by insurance. The survey is open now and will remain open until June 8, 2018.


Registration Open for 2018 Advocacy Day
December 19, 2017

Each spring, dystonia advocates from across the country gather in Washington, DC for a two-day advocacy event. During this time, participants receive updates on dystonia research from leading investigators, comprehensive advocacy training, and the opportunity to network with other dystonia-affected individuals from across the country. Dystonia Advocacy Day culminates with a trip to Capitol Hill so that participants can meet with the offices of their Members of Congress and urge their support on key legislative issues. 

This event is the dystonia community’s opportunity to make its collective voice heard throughout the halls of Congress and it is always well attended by individuals with all forms of dystonia. Without exception, volunteers who have participated in these in the past have found Dystonia Advocacy Day to be an incredibly rewarding and empowering experience. 

Join us for our 2018 Advocacy Meetings on March 19-20, 2018 at the Washington Plaza Hotel in Washington, D.C.

Registration is now closed for the 2018 Advocacy Day.

Dystonia Action Alert: Tell Your Senators to Oppose the Graham-Cassidy Legislation on Healthcare Reform
September 19, 2017

Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) recently introduced legislation known as Graham-Cassidy to repeal and replace the Affordable Care Act (ACA). The hope of these lawmakers was to hold yet another vote on repeal before October 1st, so a simple majority (51 votes) is all that is needed to pass the measure. Unfortunately, the Graham-Cassidy proposal is more extreme than other recent Senate proposals and would be particularly harmful to individuals and families impacted by chronic health conditions. Specifically, the new proposal would:

  • Allow insurance companies to charge more for those individuals with pre-existing health conditions
  • Allow states to more easily opt out of requiring quality health insurance options and comprehensive benefits
  • Expand the ability for individuals to purchase low quality health insurance benefits in lieu of more comprehensive coverage
  • Eliminate the individual and employer mandates
  • Dramatically reduce the federal commitment to Medicaid expansion
  • Eliminate the Prevention and Public Health Fund

While this effort was initially dismissed by many as a "Hail Mary," it has quickly gained support and could be voted on next week. In order to protect patients with chronic conditions, please contact your Senators and ask them to oppose the Graham-Cassidy repeal and replace proposal.


Contact the health Legislative Assistants (LAs) in the offices of your two U.S. Senators and use the message below for a voicemail or brief e-mail. The contact information for your Senate offices can be found at www.Senate.gov.


Dear (Name of Legislative Assistant),

My name is _________ and I am a constituent from [home town]. On behalf of patients with dystonia, I urge the Senator to oppose the Graham-Cassidy healthcare proposal. This proposal would be absolutely devastating to individuals and families affected by chronic illness that rely on access to quality, affordable health care.

[Briefly share your dystonia experience]

Thank you for your consideration of my request. Please tell me how you have responded to my request.