Courage and Persistence

The two most powerful weapons are courage and persistence. Nothing can stop a person armed with both. - Scott Sorrel

Armed with courage and persistence the advocates of the Dystonia Advocacy Coalition (DAC) have worked tirelessly these past few years and finally achieved our goal of having dystonia included on the list to be eligible for funding through the Congressionally Directed Medical Research Program. This means, because of the efforts of our dystonia advocates, our researchers will have another source of potential funding – getting more dystonia research going! Dystonia advocates have walked the halls of Congress – meeting with Members and their key staff; met multiple times with Congressional Staff in local offices; and have written letters and made countless calls to make this happen – AND THEY DID IT!

The DMRF has proudly worked with advocates from the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association for over four years to address the legislative and policy needs of the dystonia community. Congratulations to everyone who had a part in this. You have demonstrated that our working together – collaborating on this critical effort – makes a difference and we all have something to celebrate.

Please plan on joining us as we continue our fight for dystonia. The DAC Advocacy Day is scheduled to take place in Washington, DC on May 5 with a training and orientation session planned for May 4th. We look forward to having you there.

Register for Advocacy Day by visiting the following link:
http://www.rsvpbook.com/event.php?470398

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’

Personal Testimonies

Pictured above is Dale Dirks, President, Health & Medicine Counsel of Washington – briefing dystonia advocates


Recently we put a call out for people to share their stories with us and we are thrilled with the response. Thank you to all of you who have written and to all of you who have shared your stories with others so that people can better understand what dystonia is and how it changes the lives of those affected.

Tomorrow the DMRF will join with representatives from the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association to prepare for our Wednesday visits with Members of Congress – to help them learn about dystonia and how they can help us in our mutual goals of wiping-out dystonia. This is an important and exciting annual activity and these five organizations have been working together for the past several years as the Dystonia Advocacy Coalition to make the dystonia messages to our legislative leaders louder and stronger. We will meet to talk about the need for increases in NIH funding, concerns about patient access to treatments/reimbursement for medications, and concerns the dystonia community has regarding proposed follow – on biologics legislation but it is the personal stories the Members of Congress and their staff persons will remember. We are educating these legislators – one shared story at a time and it is making a difference.

We look forward to sharing with you stories from Advocacy Day but in the meanwhile – keep your stories coming.