Dystonia Advocacy Day and beyond

The fight to make sure dystonia we leave no stone unturned in securing support for dystonia research continues. Last month over 120 advocates went to Washington, DC to ask Members of Congress to support our request to have dystonia continue to be on the list of conditions eligible to have our researchers apply for funding through the Congressionally Directed Medical Research Program managed by the Department of Defense. Last week, Dee Linde – a DMRF and BEBRF volunteer provided testimony before the Senate Defense Appropriations Subcommittee to ask for their support. Dee, a former Navy petty officer, provided dystonia information to the Subcommittee members – appealing to them to help us learn more about dystonia so that we might be able to reduce or even eliminate the suffering of returning military personnel who, because of a traumatic brain injury, might be at risk for developing dystonia. The work of the Dystonia Advocacy Network members continues well beyond Advocacy Day and this is just one example of these efforts. Many thanks to Dee for sharing her personal story with the Senators present and to everyone who is working to keep the pressure on!

Ongoing Battle

As you know, we celebrated the addition of dystonia to the list of eligible diseases/disorders for funding considerations through the Congressionally Directed Medical Research Program, managed by the Department of Defense. Getting listed was the first big hurdle – keeping dystonia listed will be an ongoing battle.

On Wednesday morning, DMRF member and DAN advocate, Kathy Rentfrow, who is both a military spouse and the parent of a child with dystonia, presented testimony to the Senate Defense Appropriations Subcommittee – during its first hearing on the FY 2011 Defense Appropriations Bill. The significance of being called to testify before the Senate Defense Appropriations Subcommittee cannot be understated. We are so grateful to Kathy for her willingness to testify and to share her family’s story so that the entire dystonia committee may benefit. We are hopeful that the invitation for a dystonia representative to appear before the Subcommittee greatly improves our chances of having dystonia remain on the eligible conditions list.

We know a number of dystonia researchers have applied for support for research funding through this program and thanks to Kathy and the many dystonia advocates, we hope the opportunity will continue through next year – and beyond!



Click to hear the testimony
http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951aa36-cc0c-463e-8464-cb08b2e75c73

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