35 Years of Dedication

At the Foundation’s annual meeting last month, we recognized 35 years of dedication to achieving our goal of a cure for dystonia, 35 years of stimulating research, promoting awareness and providing support for dystonia-affected persons and their families. The meeting was productive and we look forward to announcing the grants we will be funding this year and to providing a report on the progress we have made over these past three decades toward achieving our goal.

Throughout the meeting I was struck with the dedication of every person there. The members of our Medical and Scientific Advisory Council, people who are incredibly busy, but who gave us their time to thoughtfully review and discuss the merits of the grant and fellowship applications. There were our recently funded investigators who presented on their research and then engaged in discussions regarding where best to direct research to advance our knowledge. The Foundation’s Board Members – people who work tirelessly to provide financial support and guidance so the DMRF can be there for those who turn to us for information, support and help. We were fortunate to have a number of guests, people who have made significant contributions to the field by reviewing grants through the Department of Defense Peer-Reviewed Medical Research Program or who have worked hard to create dystonia awareness and lead support groups. We were pleased to welcome Fiona Ross, the Chairman of the Board for the Dystonia Society in the UK – reflective of the communities desire to work collaboratively if we are to be successful in battling dystonia.

Many of these people have been there from the very beginning – and they reiterated that they are not going anywhere until we reach our goal of a cure. The anniversary provided the DMRF with the opportunity to acknowledge the extraordinary people who have been with us on this journey. People who have worked selflessly to help us end dystonia. We recognized these amazing individuals with the DMRF Distinguished Service Award.

It is my honor to announce that the DMRF Distinguished Service Award was given to the following people:

Stanley Fahn, MD - Mark Hallett, MD
Mahlon DeLong, MD - Xandra Breakefield, PhD
Laurie Ozelius, PhD - Susan Bressman, MD
Samuel Belzberg - Frances Belzberg
Dennis Kessler - Rosalie Lewis
Joseph Jankovic, MD - Claire Centrella

We thank each of these wonderfully dedicated people for their commitment to the DMRF and the dystonia community. The DMRF continues its work. Our commitment to the community remains steadfast. The DMRF is not going anywhere until we achieve our mission.

Life changing phone call...

For many graduate students, a post-doctoral research position can be seen as a “fresh start”. It’s a great opportunity for you to break away from the research you’ve been entrenched in for the past five years, learning new skills and working in areas that you’re unaccustomed to. Finding funding to support these new interests, however, can be a bit of a challenge, and while it isn’t necessary for you to walk out of grad school with some sort of fellowship under your belt, it certainly doesn’t hurt, either.

This was the situation I was in when I was finishing my Ph.D. I had spent years doing basic science research in the functional neuroimaging of complex hand behavior. I wanted to branch into translational neuroscience, applying what I had learned during my graduate training to clinical work. I had some good ideas and the green light from my post-doctoral advisor, so I began applying to your standard course of fellowship opportunities: an NRSA through the NIH and a couple of private institutions. One of those private institutions was the Dystonia Medical Research Foundation, whom I happened across at their booth for the Society for Neuroscience (SFN) meeting earlier that year. For my post-doc, I was eager to do work with patients who suffer from task-specific focal hand dystonia (FHDtsp), a debilitating movement disorder that can often bring an early end to a professional performance career. Many of my other fellowship proposals were centered on working with this population, so applying for a post-doctoral fellowship from the DMRF made perfect sense.

An advisor in grad school once told me that the grant application process can be an “exercise in rejection”, and it seemed to me that my experience was no exception. I was especially disheartened the day I learned that my NRSA did not get funded and decided to leave my future advisor a message on his machine to break the bad news. However, no more than thirty minutes later, I received a phone message from a science officer at the DMRF. I called him back immediately, and he offered his congratulations, saying that the Foundation had reviewed my application and was happy to support my project. You can imagine my advisor’s surprise when I called him back and told him not to worry about my previous message. I have to admit--as much as an “exercise in rejection” the process can be, it can also be a bit of an emotional rollercoaster.

Needless to say, the whole situation could not have turned out any better. Support from the DMRF has been far more than just two years of research funding. The Foundation does an exhaustive job of training post-doctoral fellows and preparing them for future careers in academia. The DMRF plays an active role in dystonia research, and has a strong presence at many scientific meetings (including SFN). Through the DMRF, I have been able to meet and network with other leading investigators in the field. In addition, the DMRF is responsible for organizing events where other scientists collaborate to advance the field of dystonia research. As I neared the end of my support period with the DMRF, they were encouraging and helpful as I applied for extramural funding. On top of all of this, the DMRF provides a substantial amount of outreach and health information to the dystonia community. It has been an inspiring experience and an honor to work with them.

I strongly encourage anyone interested in dystonia research to look into a Post-Doctoral fellowship from the DMRF. I’m hoping that someday you’ll get the same phone call.

Leighton Hinkley, PhD
Postdoctoral Fellow
University of California, San Francisco