Thursday, May 6, 2010

Dystonia Advocacy Day - 2010

Pictured above are just some of the many dystonia advocates who came out to Washington in support of Dystonia Advocacy Day 2010.

Many thanks to the dystonia advocates, especially our many first-timers, who participated in the biggest and best Dystonia Advocacy Day to date. Congratulations everyone! You were all fabulous!

Having so many wonderful people give their time and share their personal stories about how dystonia has affected their lives made for a very successful event. We are so grateful to all of you for joining us in this important effort. We appreciate how difficult it was for many of you to travel into Washington, DC and go from office to office in very warm temperatures. Please know your efforts do make a difference.

Advocacy is so important and you were able to enlighten many key individuals about dystonia and this is so important! Collectively we had over 100 meetings on the Hill – helping Members of Congress and/or their key health staff members understand what dystonia is and how they can help our community. People left exhausted but energized by the day’s work!

The Dystonia Advocacy Network was pleased to welcome Steve Groft, PharmD, Director of the NIH Office of Rare Disease Research as our key note speaker Tuesday evening – providing an overview of the important role patient advocates have in the research process.

We were also pleased to present Florida Congressman Bill Young with the 2010 DAN Distinguished Public Service Award for his support of the dystonia community.

A special salute to Millie Munoz for her efforts to join us in Washington, DC. Congresswoman Ileana Ros-Lehtinen of Miami highlighted dystonia and Millie on the floor of the House of Representatives yesterday. Check it out on YouTube: