Thursday, April 30, 2009

American Academy of Neurology Meeting

This week the American Academy of Neurology is meeting in Seattle for their annual meeting. The DMRF has a booth there – giving us an opportunity to talk directly with neurologists about dystonia and how the Foundation can be a resource for them in meeting the needs of people affected by dystonia. We noticed that more and more general neurologists are coming to us to ask about our patient support programs, educational materials and how we might be able to work together to meet patient needs. This is progress and something the entire dystonia community should celebrate.

This meeting also provides us with a wonderful opportunity to meet with the leaders in dystonia clinical research, members of the Dystonia Study Group and others, to discuss our upcoming plans. We are so grateful to these dedicated physicians for their great work. Many of you know them and may even be treated by them so you know first hand how committed they are to improving the lives of those living with dystonia. There are exciting new things happening that will be announced in the next few months and we will keep you posted.

Wednesday, April 29, 2009

Set your DVRs tomorrow - dystonia segment to appear on The Doctors - April 30th

April 30th - Segment on dystonia to appear on The Doctors

Please set your DVRs tomorrow (4/30/09) to see a dystonia segment on the CBS talk show, The Doctors.

Visit to find out when the show will air in your area. We would like to thank Alex for so candidly sharing her experiences with dystonia. We would also like to extend a special thanks to Dr. Mark Lew for all of his work in the dystonia community.

Then join the discussion about the show on our social networking site at

Want to see a clip of tomorrow's show?

Thursday, April 23, 2009

Mahlon DeLong, MD honored for his work

Pictured above are Jan Teller, PhD, DMRF Science Officer and Mahlon DeLong, MD, DMRF Medical and Scientific Director

This past weekend Emory University hosted a tribute to Mahlon DeLong, MD – DMRF’s Scientific and Medical Director. The DeLong Celebration included a day-long program: Basal Ganglia: Function, Movement Disorders and Treatment Options, a symposium honoring the contributions of Mahlon DeLong, MD; a celebration dinner honoring Dr. DeLong and presentations of the Courage to Inspire Awards this year awarded to Muhammad and Lonnie Ali and Dr. DeLong. The final component of this celebration was a public educational program sponsored by Emory and the Dana Alliance for Brain Initiatives, “Staying Sharp”.

It was a wonderful series of events to honor the many contributions of this extraordinary man. Dr. DeLong’s research in the 1970’s, his out-of-the-box thinking about the role of the basal ganglia has allowed for the development of successful surgical treatments available to dystonia patients today. The DMRF is so fortunate to have the benefit of Dr. DeLong’s leadership, dedication and commitment. We congratulate him on his many contributions and thank him for everything he has done to advance the field.

Friday, April 17, 2009

Billy McLaughlin appointed as DMRF Ambassador

Personal testimonies are the most effective way to raise dystonia awareness and we are grateful to all of you who have shared your personal story so that others can better understand what dystonia is and how it changes the lives of those affected. Every time you talk about your dystonia – you are helping someone to know about dystonia.

The Foundation is proud to announce the appointment of musician and person extraordinaire, Billy McLaughlin to the position of DMRF Ambassador. Billy knows all to well what it means to struggle with dystonia and how it feels to think that you are alone in this battle. Remarkably, Billy has learned how to continue his musical career and agreed to share his story in the new documentary film, “Changing Keys: Billy McLaughlin and the Mysteries of Dystonia”, that made its world premiere in Minneapolis last month. The film will be broadcast on Minnesota Public Television, TPT beginning on Sunday, April 19th (

If you have access to TPT, we encourage you to watch this wonderful film. Billy’s touring schedule can be found at his site ( or receive notices through the DMRF’s enewsletter.

Keep on sharing your stories. Everyone makes a difference – and thank you!

Wednesday, April 15, 2009

2009 DMRF Research Grants

On behalf of the Foundation’s Board of Directors, it gives me great pleasure to announce the 2009 research grants receiving important support this year. Deciding what grants to support is a difficult process and we could not do it without the assistance of the Foundation’s fabulous Medical & Scientific Advisory Board. Under the leadership of Mahlon DeLong, MD, DMRF’s Medical and Scientific Director and our Science Officer, Jan Teller, PhD, the members of the MSAC reviewed and discussed all applications submitted to the Foundation. Difficult decisions needed to be made on how best to invest our 2009 research funds and we were not able to support as many grants as we would have liked to have supported this year. Each of the grants supported will help us get that much closer to our goal of a cure for all forms of dystonia.

We are particularly happy with our decision to move ahead with our work with BioFocus to dramatically accelerate the drug discovery process by identifying and validating novel molecular targets for new treatments. This is the biggest project the Foundation has supported to date and we join with our partners, the Foundation for Dystonia Research and hopefully others to be announced soon, in putting this plan into action. We will report on this and the progress of our research projects throughout the year.

Those of you who are members and donors to the Foundation should know that because of your support, we are funding many of the brightest minds in dystonia research and you are helping to get us closer to a cure. Thank you! I invite you to take a minute to look at the projects we are funding this year.

Monday, April 13, 2009


As pleased as we are about the accomplishments of last year, we recognize that we have a great deal of work ahead of us yet to do and we are doing it during a very challenging time. The economy, the financial situation facing many Americans is sobering. We move forward into 2009 knowing that this may be a difficult year – but we do so with absolute resolve that the science we are funding is stellar and must be done if we are to get to our goals.

The grants we are funding this year will be announced shortly. We are pleased with the high quality of proposals we continue to receive. We are grateful to the many talented and experienced advisors who, under the leadership of DMRF’s Medical & Scientific Director, Dr. Mahlon DeLong, reviewed these applications and provided important comments on each. The DMRF and indeed the dystonia community are fortunate to have such dedicated and smart scientists and clinicians working to help us get to our goal of wiping out dystonia in our life time. They are amazingly gifted and generous individuals and with their continued guidance, we will get there.

Wednesday, April 8, 2009

The John H. Menkes Children & Family Dystonia Symposium

The DMRF will host a symposium this year for children and their families living with dystonia and we are pleased to announce that the symposium will be named in memory of Dr. John H. Menkes. Dr. Menkes was a special pediatric neurologist who helped to shape the DMRF as our first Medical and Scientific Director. Moreover, he was an extraordinary physician who knew that in treating a child with dystonia – you needed to treat the entire family. The symposium embodies the priorities Dr. Menkes thought important for young dystonia patients.

The symposium helps children affected by dystonia and their families to better understand dystonia through presentations by internationally recognized dystonia experts. Also important is the opportunity for these kids and their families to develop networks of friends who understand completely what it is like to live with dystonia. These networks are treasured, constant sources of support for those who attend.

The John H. Menkes Children & Family Dystonia Symposium is planned for August 14 to 16 in Chicago.

Thursday, April 2, 2009

Our recent webinar

Thank you to the over 200 people who registered for the DMRF webinar last week to receive a research update. The program featured the Foundation’s Science Office, Jan Teller, PhD, who gave a wonderful overview of where we are with dystonia research – for the layperson.

We know the science is not moving fast enough for those who are living with this every day. However, we are making progress and this is to be celebrated. There will be a recording of the program posted on the DMRF web site soon – for those of you who could not participate.

Check the website for upcoming webinars too!

Wednesday, April 1, 2009

The Oprah Show

We hope you all got to see The Oprah Show highlighting Parkinson’s Disease and dystonia.

We are grateful to the many individuals across the country who tell their stories locally so that others can better understand dystonia.