DMRF Board of Directors

The board of directors of any organization is its backbone. A board is responsible for providing the leadership and guidance needed for an organization to achieve its mission. For the DMRF, our board of directors also serves as an inspiration for so many who are affected by dystonia. We are fortunate to have volunteer leaders on our board who have passion, intelligence and an unwavering dedication to our goal of ridding the world of dystonia. This is particularly important as it relates to the type of science programs the DMRF will support – the risks we are willing to take to advance our understanding of the causes of dystonia and what can be done to expand the menu of dystonia treatment options.


The DMRF Board of Directors held its mid-year meeting this month. This meeting is traditionally a time for the Foundation to review the progress we have made in the first six months of the year and to begin to plan for the coming year. This year was no different. During the meeting, the board reviewed the Foundation’s plans for an updated homepage so that visitors to the website could more easily find the information they need. The new page went live shortly after the meeting and the response by many has been very positive! There was good discussion regarding the newly revised educational brochures and what educational materials are still needed – and planning for what we can do to fill those needs. Discussions and plans also focused on advocacy and our network of support groups.


We also reviewed the progress of our scientific investigators – both grant holders and those researchers with whom we have contracted to do dystonia work. We are planning a host a grant holders workshop next year. This is important as it provides an opportunity for the dystonia research community to have a robust discussion about current research and what direction it should take going forward. In the next few months you will hear more about the 2011 research grant program, our role in the 5th International Dystonia Symposium, the John H. Menkes Children & Family Symposium, and much, much more.

On behalf of a grateful DMRF community, I want to thank the members of the our Board of Directors for their tireless work.

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.


http://www.dystonia-foundation.org/pages/research_in_2009/148.php

Science

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.

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!