Thursday, May 7, 2009

Dystonia Advocacy Day - Recap

Pictured above: Beth and Joel Farber present Congresswoman Jan Schakowsky of Illinois with the Distinguished Service Award

The Dystonia Advocacy Coalition’s 2009 Advocacy Day was fabulous! Many thanks to the nearly 100 advocates who participated in educating our Members of Congress about dystonia and what they can do to help us achieve our goal of a cure for all forms of dystonia. The training session on Tuesday was successful – as it really prepared advocates for how to present our legislative agenda, how to handle questions but more importantly the time together provided the opportunity for experienced advocates to help first time advocates get more comfortable with what they were going to do. It was wonderful to see these first time advocates at the end of the day, exhausted because of all of the walking between offices in the Senate and the House building and exhilarated by their role in helping these leaders understand what dystonia is and how they can help us to make a difference in the lives of those who live with dystonia every day. Nearly half of our advocates were new this year and all eagerly committed to joining us again next year!

The 2009 DAC Advocacy Coalition Distinguished Public Service Award was presented to the Honorable Jan Schakowsky. The Congresswoman has represented the 9th District of Illinois for the past 10 years and has been a long-time supporter of NIH funding, was important in getting the GINA legislation finally passed last year and is a friend to the dystonia community. Congresswoman Schakowsky and her Chief of Staff Cathy Hurwit joined the DAC advocates for dinner Tuesday evening. We were thrilled to have her with us and to recognize her efforts with the award.

The DAC also welcomed two guests from another national organization who observed the training and the Congressional visits to see how we do this program. They were generous in their comments about how impressed they were to see five different organizations working together in such a focused, concerted way.

We salute all of our advocates, those who were able to join us this week, and everyone who has worked to educate legislators as to the needs of the dystonia community for their tireless efforts!

Pictured above: The IL and ME team just before ‘hitting the Hill’

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