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

2009 Child Neurology Foundation Advocacy Award Recipient

It is with great pride that I announce that DMRF has been selected as the 2009 Child Neurology Foundation’s Advocacy Award of Merit recipient. We are thrilled to receive this award from CNF, an organization that is dedicated to advocating for children and adolescents with neurologic disorders. In announcing the award, CNF states, “The Dystonia Medical Research Foundation demonstrated innovativeness and achieved phenomenal impact on behalf of the greater community. It gladdens us that we can honor the organization nominated by Dr. Jonathan Mink. DMRF is regarded as one of the strongest organizations providing advocacy while also engaging the scientific community to pursue research.”



To receive this kind of recognition for our work is a great honor. Claire Centrella, DMRF’s President, and I will receive the award next month on behalf of every member of the DMRF community. It is because of our members and supporters that the DMRF is able to fund cutting-edge research and provide support programs for children and adults who are battling dystonia. You all share in this award.

Thank you!

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.