Join us March 21-22, 2017 when 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.
Dystonia Advocacy Day took place on May 4-5 in Washington D.C. The May 4th session, held at the St. Gregory Hotel, provided the advocates with an orientation, training, and an opportunity to network. Dale Dirks, Dystonia Advocacy Network (DAN) Washington Representative, conducted training for new advocates, provided an overview on meeting with Members of Congress effectively, and reviewed the dystonia community’s legislative agenda. The Networking Dinner featured a keynote address by Dr. Steve Groft, Director of the Office of Rare Disease Research at the National Institutes of Health. Dr. Groft discussed the current state of dystonia research and promising medical breakthroughs that are driving the science forward.
On May 5th, advocates traveled to Capitol Hill for a day of meetings at congressional offices in both the U.S. Senate and House of Representatives. Ultimately, participants met with over 150 offices and about a dozen lawmakers, educating them about dystonia and encouraging them to actively support the dystonia community’s legislative agenda. Their legislative impact was immediately noticeable. Emma Mattes, a dystonia advocate from the Gulf Coast of Florida, presented the annual DAN Distinguished Public Service Award to her Congressman, C.W. Bill Young (R-FL-10th), for his successful efforts to initiate dystonia research through the Department of Defense. In addition, Congresswoman Ileana Ros-Lehtinen (R-FL-18th) made a speech on the floor of the House that recognized Millie Muñoz, a dystonia-affected constituent, and encouraged her colleagues to support further study of dystonia.
This annual two-day event draws advocates with various forms of dystonia and family members from all across the country who are interested in speaking with one voice to advance the public policy goals of the dystonia community. It is just one example of the ways individual volunteers can address the needs of dystonia patients with little more than their story and their voice.
Anyone interested in becoming a dystonia advocate or in receiving more information on the 2011 Advocacy Day, may email Dane Christiansen at firstname.lastname@example.org.