Wednesday, September 30, 2009

NIH Awards New Grant to Develop Better Treatments for Focal Dystonias

Pictured above are H. A. Jinnah, MD, PhD and Joel Perlmutter, MD

We are pleased to tell you that the National Institutes of Health (NIH) have announced the funding of a five year award aimed at forming a multicenter Dystonia Coalition to advance clinical research on primary focal dystonias. This includes Cervical Dystonia, Spasmodic Dysphonia, Blepharospasm, and others. Leading the Coalition will be H. A. Jinnah, MD, PhD, of Emory University and his co-director is Joel Perlmutter, MD of Washington University. The Coalition will bring together the most committed dystonia researchers in North America and Europe, along with dystonia patient advocacy groups. The Dystonia Medical Research Foundation (DMRF) is proud to play an integral role by providing logistical and planning support for the Coalition. The first meeting of the Coalition is scheduled for November 5th.

The $6 million award will allow the Dystonia Coalition to cultivate a better understanding of the primary focal dystonias and find better therapies. This includes projects to develop a better understanding of their natural history, establish instruments appropriate for monitoring disease severity in clinical trials, and develop proper diagnostic criteria.

Dr. Perlmutter will lead the effort to create a biorepository to store biological samples to support future research, making these resources available to investigators worldwide. Cindy Comella, MD of Rush University Medical Center, will lead the effort to develop a comprehensive rating scale, including assessing quality of life, for Cervical Dystonia and Christy Ludlow, PhD of James Madison University, will be leading the effort to develop tools to diagnose and measure severity of Spasmodic Dysphonia and assess its impact on quality of life.

In addition to these important efforts, this program will support the development of pilot projects that will directly impact diagnosis and therapy development for focal dystonias. Also included in this effort will be the awarding of career development grants to support young investigators in dystonia research.

This is a huge accomplishment for the dystonia community. This award reflects a great deal of work and collaboration among the dystonia research and patient organizations. The work done through this award is so important to helping prepare the community for clinical trials – when new, potential treatments are available. This is something that should be celebrated by all!

Wednesday, September 23, 2009

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!

Thursday, September 10, 2009

Insurance Survey Update

We want to thank everyone who participated in the insurance survey last month. We very much appreciate the time and thought you put into your responses and we have over 900 people take time to help us identify the insurance issues facing the dystonia community. Thank you all! We will let you what we found and our plan for addressing the issues in the near future.

I want to thank Oxana Zabelina for all of her work in creating and implementing the survey and the issues facing those who are fighting dystonia. Oxana, a fighter herself, has returned to the University of Massachusetts, and has resumed her studies there. We wish her every success and are grateful to her for helping us make this happen.

We also want to thank our sister organizations that worked to refine the survey and promote participation. NSDA, BEBRF, NSTA and DySTonia, Inc. were great and we are proud to work in partnership with them on activities that will help all who suffer from dystonia.

Thank you everyone!