Tuesday, March 31, 2009

How Billy's concert went...

The new documentary on dystonia, “Changing Keys, Billy McLaughlin and the Mysteries of Dystonia” made its world premiere recently in Minneapolis, MN to a sold out house. Billy McLaughlin, star of the new film, and Suzanne Jurva, creative mind and director of the film, were both present for the screening as were DMRF Board of Directors, Barb and Dennis Kessler and Donna Driscoll.

The film was a huge hit – people really seemed to enjoy it and asked excellent questions following the viewing. Then people were treated to an amazing concert by Billy and a string quartet. It was nothing short of magical. Billy’s return, and his triumph over the challenges of dystonia, should serve as an inspiration to us all.

Thank you, Billy for all you do to move forward our work toward that day of a cure.

Thank you Suzanne for making this wonderful film.

Monday, March 23, 2009

DMRF Webinar

The Foundation will host a webinar on dystonia research on March 26. The speaker will be our own, Jan Teller, Ph.D., DMRF Science Officer. Jan will give us an overview of what is new and what to watch in dystonia research. He’ll also update us on the DMRF’s 2009 research plans.

I'll blog later on how it goes.

Thursday, March 19, 2009

Changing Keys Documentary

The DMRF is pleased to be implementing our awareness and education plans. These include, but are not limited to: promotion of the new documentary film, “Changing Keys” about guitarist and DMRF Ambassador, Billy McLaughlin and his personal battle and triumph with dystonia. Billy is really a special person and his music is wonderful. The world premiere of this film will take place on Friday, March 20, 2009 in Minneapolis, MN at the Parkway Theatre and the DMRF will be there to support this extraordinary artist and his efforts to raise awareness of dystonia, especially in musicians.

Check out a sneak peek of this amazing documentary by visiting our YouTube page at


Want to know more about Billy and Changing Keys?

Visit http://www.billymacmusic.com

Wednesday, March 18, 2009

Welcome to DMRF Insights by Janet Hieshetter, Executive Director

Pictured above are members of the Medical and Scientific Advisory Council.

Dystonia Medical Research Foundation just concluded its annual Board of Directors and Medical and Scientific Advisory Council meetings. This seems like a good time to begin a new, for me anyway, method of communication. There are many who blog – but this is new for me and for the Foundation. Your comments on what we communicate, the Foundation’s plans, our activities and the blog itself are invited and welcome.

In preparing for the DMRF’s annual meeting, we reflected on our accomplishments in 2008 - it was a productive year, one in which we made progress toward reaching our goal of closing the Foundation’s doors forever. We are not there yet, but the work we did last year, the plans we developed to be implemented this year, and the partnerships formed or strengthened in 2008 are getting us closer to this goal with each passing day. We will get there – we just have to keep moving forward.

Some of these accomplishments include: funding 12 research grants, 4 fellowships – supporting young investigators and also fully implementing our plans to direct science through contracts with key investigators via the DMRF Cure Dystonia Initiative.

Scientific meetings are also a large part of our research strategy. In hosting these meetings we are able to help investigators make connections with one another, new areas of research that hopefully will be beneficial to advancing our knowledge of dystonia.

In 2008 an application was made for support of the development of a clinical network for dystonia. Dr. Buz Jinnah of Emory University, working with many other clinical leaders, developed this application to the NIH Office of Rare Diseases. The significance of this application is major. The dystonia research community worked collaboratively in developing this application and we are all eagerly awaiting word on whether or not it will be funded. (We should know in late spring.) Dystonia patient groups were also incredibly supportive of this process with BEBRF, NSDA, BSDPF, Tyler’s Hope, NSTA and DySTonia, Inc. participating in numerous meetings to help coordinate the development of the application and the effort.

Other accomplishments for the DMRF in 2008 include: community educational forums held across the country, a Midwest regional meeting held in suburban Chicago, receipt of the American Brain Coalition’s Advocacy Award, and numerous network events.

On behalf of the DMRF, I want to thank everyone for your support and many efforts. We are inspired by those who manage every day while battling dystonia. The courage we see in you serves as a source of strength to so many others.

Thank you.