DMRF Insights by Janet

Music’s Dirty Little Secret

2012-02-07T15:34:00.005-06:00

The dirty little secret in some music circles isn’t what you might think. It’s not drugs, groupies, or feuding band members. It’s dystonia.

Although dystonia is considered a rare disorder, professional musicians clearly appear to be at increased risk. Experts have suggested that one in 200 musicians may develop dystonia over the course of his/her career.

Dystonia awareness among musicians has grown over the last decade, but it’s still a topic many affected performers find difficult to talk about publicly. Like individuals with other forms of dystonia, the loss of abilities that once were routine turns a musician’s life and career upside down. Prior to diagnosis, musicians often perceive early symptoms as the result of faulty technique or lack of sufficient preparation. Increasing practice or taking time off does not help, and the symptoms only get worse. Critics may suspect a performer has “lost his chops” or has a substance abuse problem because of uncharacteristically strained or imprecise playing. The fact that symptoms only occur when playing an instrument is one of the most frustrating and baffling aspects of the disorder—but it may also hold the key to better understanding how symptoms occur and how to effectively treat them.

The Dystonia Medical Research Foundation (DMRF) is proud to partner with Musicians With Dystonia to host the first ever Musician’s Dystonia Summit, March 9-10, 2012 in New York, New York. Musicians and researchers are gathering to discuss the latest information on musician’s dystonia, best treatment practices, and future scientific directions.

Musician's dystonia provides an opportunity to better understand all dystonias. There is a clear connection between the onset of dystonia and the intense and lengthy practice of difficult and skilled music over a long period of time. When researchers can “connect the dots” and figure out how this overuse leads to symptoms, this will be a huge breakthrough to better understand the dystonia disease mechanism—and therefore bring us one step closer to better treatments and a cure.

Many thanks to members of the planning committee who have worked diligently to build an outstanding agenda of speakers and bring this special meeting to fruition, including Mahlon DeLong, MD, Glen Estrin , Steven Frucht, MD, Mark Hallett, MD, Billy McLaughlin, and Jan Teller, PhD. We also appreciate the many musicians who are graciously donating their time to share their stories and talents at the Summit. See the DMRF website for a detailed agenda and information on how to register.

Volunteers Needed for Global Dystonia Registry

2011-12-13T16:11:00.004-06:00

The DMRF is proud to be a part of a two-year effort to develop and implement the first-ever patient registry devoted to focal dystonias. The registry is designed to collect data on persons affected with a focal dystonia(s) to assist in clinical research efforts including clinical and research trials.

This collaboration is between dystonia patient organizations and the research leaders of the Dystonia Coalition to develop and offer this self-reporting patient registry to the dystonia community. “The registry is a fantastic new opportunity for the dystonia community worldwide. It is going to be extremely valuable for fostering better communication between people who are affected by dystonia and researchers who are trying to learn more about dystonia,” said Dr. H. Jinnah, the principal investigator for the Dystonia Coalition. The goal of the registry is to support future dystonia studies through the collection of data on persons affected by dystonia.

Although the focal dystonias have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share. This Registry compliments the current scope of research for the Dystonia Coalition, a National Institutes of Health supported clinical research effort.

To learn more or to register with the Global Dystonia Registry go to: http://www.globaldystoniaregistry.org/

Giving Thanks

2011-11-22T07:33:00.003-06:00

During this season of thanks, I want to take this opportunity to thank all of you who have supported the DMRF and those we serve. Your efforts are deeply appreciated and allow us to carry out the organization’s mission. We could not do what we do without you.

We are grateful to our researchers and Medical & Scientific Advisors for the work they do to get us to that magic day when the DMRF is no longer needed because a cure has been found.

We are thankful to our clinicians who work so hard to help alleviate the pain and suffering dystonia brings everyone touched by this disorder.

We appreciate the tireless efforts of our support group leaders who work to meet the needs in their communities while providing a helpful hand to those managing every day with dystonia.

We want to thank the growing number of advocates who are working to have the legislative needs of this community addressed by our Federal and State Legislators.

We are grateful to those who have shared their dystonia story so that others can better understand what dystonia is and how it changes lives.

To anyone who has listened to someone having a rough day and offered encouragement or to those who were in a position to give a hug to let someone know they are not in this alone, we are thankful for your kindness and warmth.

We appreciate our donors who have placed their trust in the DMRF and who have allowed us to do the work we do. We value the pharma companies who work to produce therapies that, together with a treating physician, are bringing relief to many.

Finally, we appreciate our dystonia partners, the other Dystonia Advocacy Network Members – BEBRF, DySTonia, Inc., NSDA, and NSTA, Tyler’s Hope, our European partners – groups that the DMRF has worked with to advance our understanding of dystonia while working to meet the needs of those affected by dystonia.

This Thanksgiving we will be thinking about everyone who has worked to make a difference in the life of someone touched by dystonia. Thank you.

5th International Dystonia Symposium

2011-10-24T16:59:00.003-05:00

The 5th International Dystonia Symposium came to an end in the early evening on Saturday, October 22nd. A theme throughout the three day meeting was overhearing someone say, “This is the best dystonia meeting I have ever attended.” Kudos to the Scientific and Program Committee members – Alberto Albanese, Mahlon DeLong, Wendy Galpern, Mark Hallett, Buz Jinnah, Ryuji Kaji, Christine Klein, Tony Lang, Jan Teller, Marie Vidailhet and Tom Warner – who worked so hard in putting together this fabulous program. 560 people attended the symposium and were able to experience the energy that can be felt in this field. The discussions and ideas generated during the meeting are exciting. DMRF members should be proud of the numerous researchers who cited the support of the DMRF for the work they presented. A summary of the meeting will be issued shortly but you all should know that this was a resounding success and everyone left really motivated to keep the progress continuing!

School is in Session

2011-10-13T13:21:00.009-05:00

The school year is well into full-swing across the country. Schedules fill quickly each week with homework assignments, after school clubs, and last-minute revelations from your child that he needs 50 homemade brownies and a made-to-scale diorama of Mount Rushmore for school the next day. Parents of children with dystonia have added challenges and decisions to make about how to ensure their students have the best year possible, let alone how to get through the week. It takes added vigilance to make sure a child with physical challenges is being served appropriately by the education system.

The DMRF is proud to partner with long-time member and special education expert Roberta Senzel, Esq. and offer a new blog entitled "Dystonia & Special Education" at http://dmrfspecialed.blogspot.com/ The purpose of the blog is to help parents of dystonia-affected children navigate the education system and have access to practical, essential information. Roberta is not only a special education attorney and university school law instructor, she is also the mother of a grown child with dystonia. Roberta knows what it is like when dystonia invades a family, and she also knows what it takes to help affected children succeed and thrive in school. Roberta is a frequent speaker at DMRF events—including the bi-annual Children & Family Symposium—and an active member of the Greater Washington, DC Dystonia Support Group.

Roberta will be blogging regularly on the federal education laws every parent should understand, tips for working with educators, transition after high school, and many other topics. You are welcome to submit questions and topics you would like to see Roberta address at dystoniaschool@dystonia-foundation.org

Many thanks to Roberta for sharing her insights and expertise, and for providing this excellent resource for the dystonia community. There are few greater gifts in this world than a talented, compassionate teacher and Roberta is just that!

Seek Credible Sources for Information on Movement Disorders

2011-09-23T07:44:00.007-05:00

We all know you can’t always rely on information you find on the internet to be accurate, and this includes descriptions of dystonia and other movement disorders. To those of us who live with dystonia every day and who know the importance of promoting awareness, few things are more frustrating than a media story or online blog that disseminates incorrect information about this already frequently misunderstood disorder.

The DMRF applauds a recent letter to the editor in the New England Journal of Medicine that addresses this matter. Physicians are reporting that a growing number of individuals with movement disorders are coming to them with inaccurate portrayals of these disorders from the internet, especially from the video sharing website YouTube. These videos are causing many people undue concern by providing inaccurate depictions of movement disorders (including dystonia) and suggesting treatments and cures not backed by trustworthy sources.

The DMRF echoes the New England Journal of Medicine in reminding those of us with dystonia to seek out credible sources for medical information. We encourage you to verify the sources of information about treatment options and only rely on those backed by solid scientific study and endorsed by a qualified physician trained in movement disorders.

The DMRF will continue to take very seriously our efforts to provide our community with accurate, timely information about dystonia and the latest news in treatments and research—an effort we have undertaken for 35 years. The DMRF is privileged to work closely with the world’s top thought leaders in movement disorders to make sure the information we provide you is sound.

It’s unfortunate that there are people in the world who take advantage of a platform like YouTube, which can do so much good, and use it in a manner that is harmful. This does not in any way diminish the tireless work of our friends in the dystonia community who are promoting awareness—including through social media websites like YouTube and Facebook—and helping the un- and misdiagnosed access the information and resources they need. Now more than ever, we need to make sure individuals impacted with dystonia know where to go for good information.

Art Kessler
President

Dystonia Makes It Into the Smithsonian

2011-09-12T14:07:00.001-05:00

One of the messages the DMRF tries to convey to our members is that your story matters. Your story is important. The courageous act of sharing what it’s like to live with dystonia—on whatever level you are comfortable—can inspire others and change lives.

Because Esther Goodhart was generous enough to share her story, she has brought her experience with dystonia to an exhibit at the Smithsonian’s National Portrait Gallery. A gala on September 16, 2011 will celebrate the launch of the exhibit, entitled "Portraiture Now: Asian American Portraits of Encounter." A portrait of Esther joins scores of others in this special exploration of what it means to be Asian in America.

Many congratulations to Esther for this prestigious achievement! She reminds us all to take pride in who we are and where we come from. By examining those qualities we perceive as differences—in terms of gender, race, ethnicity, (dis)ability—we may ultimately realize more clearly how much we are in fact alike. When you share your story, you inspire others to give voice to their own. You help others understand an experience they do not know firsthand. And your story may suddenly become more powerful than you ever imagined it could be.

A Feeling of Community

2011-08-29T12:05:00.001-05:00

Like you might expect, when I was finally diagnosed with dystonia after struggling with it for a number of years I rushed home and went online to learn more. I wanted to educate myself about the disorder that had taken so much away from me. I had hopes of finding some magic bullet that might make it go away and make me a "normal" person once again. What I found after just one click of the search engine was the DMRF! It instantly became clear to me that I wasn't alone in searching for a cure and that there were decades of outstanding efforts already invested by the DMRF and the families and individuals who founded and continue to serve the organization. My dystonia was a personal struggle that had been very lonely for me up until that point. That feeling of loneliness has been transformed into a feeling of community - a community driven to support each other while pushing forward through the seemingly impossible science needed to understand the miracle of the human brain.

Never would I have thought that neurology would become as big a part of my daily consciousness as it is today. Some people know of my son and his courageous battle with epilepsy. I can't go more than a few minutes in any day without feeling an immense urgency for the advancement of neuroscience. And never would I have thought while sitting at my computer during my first visit to the DMRF website that I would one day be nominated to the board of directors. It is profoundly humbling to be surrounded by people whose dedication and hard work have put the DMRF at the forefront of the quest for a cure. I'm honored to be joining the board as the DMRF leads important initiatives that will lead to a globalization of our community and the sharing of research currently going on all across the world. Joining the DMRF board of directors inspires me to raise my own expectations for how I can contribute towards finding a cure, how I can better support the raising of awareness of dystonia worldwide and most importantly how I can be an asset to any and all individuals who struggle with the challenges dystonia poses for their own sense of wholeness and self-worth. Together we make greater progress towards our future goal - a world without dystonia.

Billy McLaughlin
DMRF, ex-officio board member

Nothing can stop us!

2011-08-24T15:25:00.003-05:00

Pictured are Silas Courson and Amy Behar, participants of the 2011 DMRF John H. Menkes Children and Family Dystonia Symposium.

This past weekend 200 people traveled to Chicago to participate in the DMRF’s John H. Menkes Children & Family Symposium. Traveling when you are affected by dystonia is challenging yet these people and their families did and the result was a fabulous gathering of learning, support and wonderful memories. The program was expanded to include adults with focal dystonias – cervical dystonia; focal hand dystonia; dopa-responsive-dystonia; laryngeal dystonia or spasmodic dysphonia and then kids with generalized dystonia; DYT1 dystonia and myoclonic-dystonia. It didn’t matter what form you had – the emphasis was on meeting one another and learning that no one with dystonia needs to battle alone. We had world-class speakers providing information and many new friendships were formed. The DMRF is proud to serve this community and we are ready and willing to assist anyone who needs help – after this weekend we have new volunteers who are also willing to support those who need are facing each day with dystonia.

Thank you to all who made the effort to join us – to all of our wonderful speakers and to our fabulous volunteers. Together – there is nothing that can stop us!

Another piece of the puzzle

2011-07-20T16:33:00.003-05:00

The DMRF is committed to advancing research and achieving our mission of identifying new and more effective treatments and ultimately a cure for all forms of dystonia. The Foundation has proudly supported most of the world’s leading dystonia researchers resulting in discovery of pieces of the dystonia puzzle. This past week, our understanding was again advanced with the publication of a study that was supported by the DMRF and the National Institute of Neurological Disorders & Stroke.

DMRF grant recipient Flavia Nery, PhD and longtime dystonia investigator Xandra Breakefield, PhD of Harvard’s Massachusetts General Hospital, and their collaborators have discovered a significant clue toward understanding why a mutation in the DYT1 gene might lead to dystonia. According to the paper published in the prestigious online journal, Nature Communications, torsinA is involved in eliminating misfolded proteins from a part of the cell called the endoplasmic reticulum. When mutant torsinA, which causes DYT1 dystonia, is present, it interferes with this process, making cells unusually vulnerable to cellular stress that may compromise neuronal function. This work demonstrates a cellular link between the disease-causing torsinA mutation and fundamental mechanisms of neuronal dysfunction that may ultimately lead to dystonia.

DMRF Science Officer Jan Teller, MA, PhD explains, “Essentially, all dystonia disorders are considered a neural circuits malfunction. Therefore finding any molecular or biochemical way to put these circuits back ‘in order’ would be beneficial to all dystonias. Understanding how this works in DYT1 dystonia may suddenly open up new possibilities for designing dystonia-specific treatments.” Current dystonia therapies such as botulinum neurotoxin injections and deep brain stimulation surgery suppress symptoms without altering or improving the course of the disease. A new generation of therapies that target dystonia at the cellular level would be revolutionary to the field and could provide relief to thousands of patients.

Dystonia Advocacy Day and beyond

2011-06-27T12:30:00.003-05:00

The fight to make sure dystonia we leave no stone unturned in securing support for dystonia research continues. Last month over 120 advocates went to Washington, DC to ask Members of Congress to support our request to have dystonia continue to be on the list of conditions eligible to have our researchers apply for funding through the Congressionally Directed Medical Research Program managed by the Department of Defense. Last week, Dee Linde – a DMRF and BEBRF volunteer provided testimony before the Senate Defense Appropriations Subcommittee to ask for their support. Dee, a former Navy petty officer, provided dystonia information to the Subcommittee members – appealing to them to help us learn more about dystonia so that we might be able to reduce or even eliminate the suffering of returning military personnel who, because of a traumatic brain injury, might be at risk for developing dystonia. The work of the Dystonia Advocacy Network members continues well beyond Advocacy Day and this is just one example of these efforts. Many thanks to Dee for sharing her personal story with the Senators present and to everyone who is working to keep the pressure on!

Dystonia Awareness Week Reflections

2011-06-13T21:50:00.001-05:00

Increasing awareness of dystonia is an ongoing challenge but with the continued efforts of this community – we will help people truly understand what dystonia is and how it changes lives. We’ve just completed Dystonia Awareness Week and we want to thank the many people who made a special effort these past seven days to tell their stories – to reach out and talk about dystonia. We are grateful to those of you who ‘tweated’ during dystonia twitter day on Tuesday of this past week, to those of you who have shared your stories by becoming a part of the Faces of Dystonia program, and to those of you who shared your story through the media – it all makes a difference! Whether you are telling of your experiences through a national outlet or while standing in line at the grocery store – you are giving selflessly so that others will learn about dystonia. Every effort counts. Congratulations on your good efforts. Let’s keep it up!

35 Years of Dedication

2011-03-17T10:13:00.004-05:00

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.

Good News

2011-01-20T15:15:00.008-06:00

It seems hard to believe that we are already in the middle of January. The holidays are nothing but a faint memory now – hope your season was a good one. I want to thank everyone for their hard work and support last year. We could not do what we do without you and your efforts have helped us off to a great start in this New Year.

The first good bit of news is that two dystonia researchers have been funded through the Department of Defense Peer-Reviewed Medical Research Program. Cris Bragg, PhD (pictured) and Kathleen Sweadner, PhD will receive funding for their work through this program. We offer our congratulations to them and to the many Dystonia Advocacy Network volunteers who have worked so hard over the past many years to get dystonia included on the list of eligible disorders so that our researchers could apply for this funding. We are also able to begin the year with gratitude to the Centers for Medicare and Medicaid Services for issuing a temporary billing code for the recently approved botulinum toxin, type A, Xeomin®. This means that dystonia-affected persons will have access to all FDA approved treatments because now doctors who might have been reluctant to use this new treatment because of potential billing hassles will have those hassles removed. We want to thank the CMS staff for their receptivity to hearing the patient’s perspective on this issue and again thank the DAN volunteers who made visits to Members of Congress in August and who went to CMS to provide personal testimony. The collaboration of the DAN organizations is to be celebrated as we are moving forward to meet the needs of those affected by dystonia.

A Year of Progress

2010-12-29T10:46:00.004-06:00

A year of progress, 2010 has taken us important steps closer toward the Foundation’s mission of supporting research that will lead to a cure, education and dystonia awareness, and those individuals affected by dystonia and their families. The DMRF is proud of the work we have done these past 12 months, and we thank our many volunteers, advocates, donors and our local and national leaders. We have achieved all we have in 2010 because of the support of these remarkable people.

This year, we continued our commitment to funding of cutting edge-research and fellowships and approved 15 research projects. The Foundation’s Science Officer worked with another 5 investigators to develop contracts that will help us fill in some of the missing pieces of this big dystonia puzzle. The DMRF is pleased to partner with the Foundation for Dystonia Research to support a better understanding of dystonia. The DMRF is also pleased to partner with Tyler’s Hope for a Dystonia Cure in supporting phase II of the BioFocus project, an important scientific research project that is designed to identify and validate potential targets, that will hopefully lead to drug development for DYT1 dystonia. Our work in serving as an administrative center for the Dystonia Coalition, an NIH sponsored clinical research project, continues.

The DMRF has been honored to work with the Dystonia Advocacy Network (DAN) for the past five years. Joining with members of the Benign Essential Blepharospasm Research Foundation, the National Spasmodic Dysphonia Association, the National Spasmodic Torticollis Association and DySTonia, Inc., we have worked to make sure the legislative and policy needs of the dystonia community are heard in Washington, D.C. This past year, DMRF President, Art Kessler, provided testimony to the FDA and longtime DMRF leader, Kathy Rentfrow, provided testimony before the Senate Defense Appropriations Subcommittee regarding dystonia research funding. The DAN has worked to ensure that all patients have access to all approved treatments for dystonia and just last week met with key individuals at the Centers for Medicare Services regarding this issue.

We welcomed new support groups to our network of local resources working tirelessly to make sure people know they are not alone in this battle. Our regional meetings helped to provide education and connect people with one another.

Our commitment to our mission remains resolute, and we look forward to continuing our progress into 2011.

But we always remember that we can’t do it without you. Thank you for all you have done this past year. I wish you and your families all the best in the New Year ahead.

Remembering Charles H. Markham, MD

2010-12-16T17:24:00.002-06:00

It is with a deep sadness that I report the sudden death of Charles H. Markham, MD. Dr. Markham died in his home in Santa Barbara, CA last month.

Dr. Markham was an extraordinary man. He grew up in Southern California and served in the army during WWII, stationed in France, Belgium and Germany. During his service, he befriended a neurophsychiatrist who had Parkinson’s Disease and who was influential in Dr. Markham’s decision to become a physician.

Dr. Markham’s contributions to the DMRF and the dystonia community will be long felt. While at UCLA, Dr. Markham investigated the structure and function of the basal ganglia while evaluating treatments for Parkinson’s Disease, dystonia, and epilespsy. He was also committed to assisting patients in receiving the best treatments possible. Dr. Markham served as the DMRF’s Scientific Director from 1985 to 1994 helping to shape and develop both the DMRF’s research program and the Foundation during an important time. Since his retirement from this position, Dr. Markham continued to participate in scientific discussions – providing important guidance and counsel. He was instrumental in developing and implementing the brain tissue donation program. We send our condolences to Dr. Markham’s family and his many, many friends. He will be missed.

During this time of reflection and thanks, we here at the DMRF are thankful to have had the benefit of scientific leaders as Dr. Markham and so many others. Their commitment to this community is inspiring.

Why not?

2010-11-05T09:32:00.002-05:00

For nearly 35 years, the DMRF has been asking questions of our researchers, pushing them for scientific answers and always moving forward with a “can-do” attitude. At first, it was an uphill battle – trying to convince researchers that this was a field worthy of their time and energy. Recently, we have seen more activity and enthusiasm around dystonia research, more information and more progress. This is all to be celebrated by everyone in the dystonia community! We want you to know that the DMRF continues to push – asking ourselves, “Why not?” Why shouldn’t we take what we now know and push the science further to see what we learn? This is why the Foundation is taking the next step with a major project that we hope will lead to identifying proteins that modify the DYT1 dystonia phenotype. The concept is to use a genetic approach based on silencing selected genes and monitoring the effect of such silencing on torsinA function. This is a high-risk project, but the Foundation feels strongly that it needs to be done as it may possibly lead to potential drug targets and, eventually, to new treatments. Our Science Officer, Dr. Jan Teller, will manage this pioneering new project. This phase of the project began this week, and will continue through the Spring of 2011. We are very excited about this work. Look for a formal announcement in the next week, but we wanted to let you know early about this one way in which the spirit that founded DMRF – pushing for action and answers -- continues today.

Dystonia Education

2010-09-08T16:26:00.002-05:00

Now that the summer is unofficially over, learning is happening anew as students return to schools across the country. Education is also on our minds as we finalize plans for several major educational efforts scheduled for this fall. We know that staying abreast of current developments in dystonia is critical to successfully managing this disorder. It is also important to be able to share these educational experiences with others who can truly understand dystonia – folks who are affected by dystonia either directly or through a loved one. The French poet and author, Anatole France said, “Nine tenths of education is encouragement.” We couldn’t agree more!

The Foundation has been a longtime supporter of educational opportunities – because it is important to hear from the leading medical experts but also because it is so important to connect with others – to receive and give encouragement. The DMRF will host a Western regional meeting on October 1 & 2 in Pasadena, CA and a Mid-Atlantic Meeting on November 14th in Silver Spring, MD. These meetings are designed to give you accurate, updated information but as importantly – provide you with a forum to make or renew friendships – to encourage and be encouraged.

If you can, please join us for these opportunities.

DMRF Board of Directors

2010-08-23T13:57:00.012-05:00

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.

Ongoing Battle

2010-06-25T11:00:00.005-05:00

As you know, we celebrated the addition of dystonia to the list of eligible diseases/disorders for funding considerations through the Congressionally Directed Medical Research Program, managed by the Department of Defense. Getting listed was the first big hurdle – keeping dystonia listed will be an ongoing battle.

On Wednesday morning, DMRF member and DAN advocate, Kathy Rentfrow, who is both a military spouse and the parent of a child with dystonia, presented testimony to the Senate Defense Appropriations Subcommittee – during its first hearing on the FY 2011 Defense Appropriations Bill. The significance of being called to testify before the Senate Defense Appropriations Subcommittee cannot be understated. We are so grateful to Kathy for her willingness to testify and to share her family’s story so that the entire dystonia committee may benefit. We are hopeful that the invitation for a dystonia representative to appear before the Subcommittee greatly improves our chances of having dystonia remain on the eligible conditions list.

We know a number of dystonia researchers have applied for support for research funding through this program and thanks to Kathy and the many dystonia advocates, we hope the opportunity will continue through next year – and beyond!

Click to hear the testimony
http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951aa36-cc0c-463e-8464-cb08b2e75c73

In Memoriam - Shari Farber Tritt

2010-06-07T17:09:00.002-05:00

It is with profound sadness that we announce the death of a member of the DMRF family, Shari Farber Tritt. Shari and her husband Ira touched the hearts of millions through the dystonia documentary film, TWISTED several years ago. For those of us who knew her, Shari was an inspiration every day. Although dystonia took much from her, she never let it defeat her. Shari had a love of life, an infectious laughter, a devotion to her family and the courage she demonstrated was a source of strength for so many in our community. Shari died on Saturday after a tragic accident in their swimming pool. She will be missed by many. Our sympathies go out to Ira, her parents, Harriett and Joel, and her sister Beth.

Dystonia Advocacy Day - 2010

2010-05-06T16:20:00.010-05:00

Pictured above are just some of the many dystonia advocates who came out to Washington in support of Dystonia Advocacy Day 2010.

Many thanks to the dystonia advocates, especially our many first-timers, who participated in the biggest and best Dystonia Advocacy Day to date. Congratulations everyone! You were all fabulous!

Having so many wonderful people give their time and share their personal stories about how dystonia has affected their lives made for a very successful event. We are so grateful to all of you for joining us in this important effort. We appreciate how difficult it was for many of you to travel into Washington, DC and go from office to office in very warm temperatures. Please know your efforts do make a difference.

Advocacy is so important and you were able to enlighten many key individuals about dystonia and this is so important! Collectively we had over 100 meetings on the Hill – helping Members of Congress and/or their key health staff members understand what dystonia is and how they can help our community. People left exhausted but energized by the day’s work!

The Dystonia Advocacy Network was pleased to welcome Steve Groft, PharmD, Director of the NIH Office of Rare Disease Research as our key note speaker Tuesday evening – providing an overview of the important role patient advocates have in the research process.

We were also pleased to present Florida Congressman Bill Young with the 2010 DAN Distinguished Public Service Award for his support of the dystonia community.

A special salute to Millie Munoz for her efforts to join us in Washington, DC. Congresswoman Ileana Ros-Lehtinen of Miami highlighted dystonia and Millie on the floor of the House of Representatives yesterday. Check it out on YouTube: http://www.youtube.com/user/cemiwire#p/a/f/0/rzGlJ2WB9X0

American Academy of Neurology Recognizes Billy McLaughlin

2010-04-09T16:06:00.003-05:00

This week the American Academy of Neurology will be in Toronto for its annual meeting. This meeting provides a wonderful opportunity for the DMRF to meet with the leading movement disorder specialists; reach general neurologists to raise their awareness of dystonia and the resource they have in the DMRF; and to work with other dystonia patient organizations in promoting the Career Development and Pilot Project grants of the Dystonia Coalition.

This year’s meeting has an added significance in that the Academy will be recognizing Billy McLaughlin with their 2010 Public Leadership Award. Billy, appointed DMRF Awareness Ambassador in 2008, will join Julie Andrews, Cuba Gooding, Jr., Leeza Gibbons, Leon Fleischer and others in being recognized by the AAN for the good works they have done in raising awareness of neurological disorders.

For those of you who have been lucky enough to meet Billy, you know how special this man is. His talents are enormous and his courage so inspiring. He is the subject of a documentary film that tells the story of his dystonia diagnosis and his brave decision to learn to play the guitar with his other hand! His comeback is truly remarkable. Billy is dedicated to raising dystonia awareness and to letting people know they are not alone in this battle. We are proud to work with him.

We salute Billy for this impressive honor and will be cheering loudly as he receives this well deserved recognition. Congratulations Billy! Way to go!!!

In the next few weeks we will have more news about Billy and how you will be able to view, Changing Keys, Billy McLaughlin and the Mysteries of Dystonia on your local PBS television station.

Greetings from DMRF's New President - Art Kessler

2010-03-17T10:54:00.002-05:00

I essentially grew up with the Dystonia Medical Research Foundation (DMRF) and it is my great pleasure to now serve as President of the Board of Directors. My predecessor Claire Centrella led the DMRF through many important and exciting years, and her leadership was critical to our success. I join the dystonia community in thanking her for her committed and steadfast service.

A little about me: my parents, Dennis and Barbara Kessler, have been involved with the DMRF since the very beginning. Their commitment was fueled by the desire to make a significant difference in the quality of my life, for I had been diagnosed with early onset dystonia at the age of 12. This diagnosis came after years of unexplained symptoms, countless doctor visits, and many a sleepless night.

As a child, I was struck by their drive to make things better, not just for me, but for all families devastated by this disorder. They taught me to work hard for a cause bigger than myself and that is exactly what I plan to do. They didn't give up and they instilled in me that same unyielding desire to find the answers.

I support the work of the DMRF because it is making a difference. As an adult, I learned that I was positive for the DYT1 gene mutation, a gene found through funding by the DMRF. My two sons were conceived through a form of in vitro fertilization that ensured they would not inherit the mutated gene. They are dystonia free and, at 6 and 2 years old, are busy and energetic. Their childhood will be very different from mine, and that means the world to me.

In 2007, when it became too painful to walk to the park with my son, I decided to undergo deep brain stimulation surgery, the results have been life changing. My wife and sons now have a husband and father who, despite having dystonia, is physically able to be active and fully engaged. None of this would have been possible without the DMRF.

I know dystonia. I know the DMRF. Over the years, I have come to know many of you and I am optimistic about our future and our plans to wipe out dystonia. I look forward to working hard on your behalf and with your partnership. Thank you for your support.

Sincerely,

Art Kessler
President

Life changing phone call...

2010-03-01T15:08:00.005-06:00

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

Our salute to you

2010-02-23T09:38:00.003-06:00

DMRF Founders Fran and Sam Belzberg in Vancouver with the Olympic torch. Sam Belzberg was an official flame carrier and is pictured here in the uniform of those who carried the torch for these games.

Athletes prepare for years to qualify for the Olympic competition. They work tirelessly on conditioning, skill building and strategy – all with an eye toward the dream of winning a gold, silver or bronze medal someday. Persons living with dystonia are all gold medal winners in our eyes. They too work tirelessly to develop the skills it takes to manage life with dystonia, creating strategies for how to overcome the limitations dystonia has imposed and the effort to do this is equal or more than that of an Olympiad. We salute those struggling to overcome the burdens of dystonia and go into our annual meeting, research reviews and planning for 2010, inspired by your stories, your courage and strength.

DMRF Update

2010-02-19T14:36:00.005-06:00

Pictured above are Jan Teller (standing) and Mahlon DeLong.

The DMRF has been working to prepare for the annual meeting of our Medical and Scientific Advisory Council (MSAC) and Board of Directors meetings scheduled for February 25 to 27th. This is a busy but exciting time for the Foundation. Our wonderful MSAC members will review the grant and fellowship applications – discussing the scientific merit and the applications relevancy.

I wish everyone could witness this process as these reviews are thorough and thoughtful. Our MSAC members work with an understanding of the urgency in the community and the need for us to invest in those projects and investigators that are most likely to produce another piece of this dystonia puzzle – leading us to have a fuller scientific picture. Leading this effort is Mahlon DeLong, the Foundation’s Scientific Director and Jan Teller, the Foundation’s Science Officer – we are fortunate to have the benefit of these two dedicated individuals and are grateful to them for all they do for the DMRF and the dystonia community.

Joining us this year for this meeting will be the President and Executive Director of the European Dystonia Federation (EDF). We know that solving the dystonia mystery is going to take a global effort and we are so pleased that they are joining us for this meeting and discussions on how we can continue our collaboration going into 2010 and beyond.

The DMRF Board will also be discussing a number of new and exciting program initiatives. We look forward to sharing those with all of you following the meeting. Stay tuned for research and program announcements in March.

Happy New Year from the DMRF

2010-01-05T14:50:00.004-06:00

On behalf of the DMRF I want to wish everyone a Happy New Year. We are looking forward to continuing the momentum that the events of 2009 generated into 2010. There is much to be grateful for as we look back at the milestones from last year.

• The wonderful research projects supported by the DMRF in 2009. We are beginning to receive progress reports from the work funded by the Foundation last year and it is exciting to see results. We are always pleased with our fellowships – funding young investigators is so important.

• Working in partnership with the Foundation for Dystonia Research, the DMRF launched a $1.8 million dollar research contract to identify and validate novel molecular targets for dystonia drug discovery and development. This project is possible because of the many years of research the DMRF has supported – including the DMRF funded discovery of the DYT1 gene in 1997. The first phase of this enormous scientific project was completed in 2009.

• Additionally, the DMRF is contracting for the development of a new animal model for dystonia. This is also important for drug discovery/development.

• DMRF continues to hold discussions with pharma to engage them in dystonia. In 2009 a significant meetings were held and we are optimistic about the interest expressed in dystonia – developing into additional, new treatments for dystonia.

• DMRF was pleased to join with Tyler’s Hope in launching a patient registry for DYT1 dystonia – another important element in getting new treatments on the market.

• Our scientific meetings continue to be important. Last year, the DMRF hosted a meeting for young investigators, a meeting on myclonus dystonia and a number of other meetings to help support the development of the NIH/ORD Dystonia Coalition program.

• The Children & Family Symposium was a major success – with many new families learning that they are not alone. This combined with our ongoing educational efforts and the fabulous support/education efforts of our support groups has provided accurate information to thousands of people.

• The Dystonia Coalition – the clinical research program approved by NIH is a major step forward for the community. The DMRF is proud to serve as an administrative center for this important program – providing administrative support for meetings, payments to the clinical sites, pilot projects and this past year, to have co-sponsored the Career Development Award.

• Last – but certainly not least – we are grateful to join with our advocacy partners the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Assocition in celebrating the addition of dystonia to the list of eligible diseases for funding through the Congressionally Directed Medical Research Program. This was a wonderful way to end the year.

2010 looks to be a year of continued progress. The research grant applications recently submitted look good – these will be reviewed in February when our Medical & Scientific Advisory Council will be meeting. We will be launching new scientific exploration through our contract program and look forward to sponsoring and participating in key scientific meetings throughout the year.

We also look forward to continuing our community education programs, webinars, a western regional meeting and another successful Advocacy Day this spring.

Achieving our goal of a cure for all forms of dystonia can’t be done alone. We appreciate the partnerships we have globally and thank all of you for your support of the DMRF. We look forward to sharing with you the progress of the coming year and to hearing from you about how we can help you until that wonderful day when our work is finished.

Courage and Persistence

2009-12-23T15:47:00.004-06:00

The two most powerful weapons are courage and persistence. Nothing can stop a person armed with both. - Scott Sorrel

Armed with courage and persistence the advocates of the Dystonia Advocacy Coalition (DAC) have worked tirelessly these past few years and finally achieved our goal of having dystonia included on the list to be eligible for funding through the Congressionally Directed Medical Research Program. This means, because of the efforts of our dystonia advocates, our researchers will have another source of potential funding – getting more dystonia research going! Dystonia advocates have walked the halls of Congress – meeting with Members and their key staff; met multiple times with Congressional Staff in local offices; and have written letters and made countless calls to make this happen – AND THEY DID IT!

The DMRF has proudly worked with advocates from the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association for over four years to address the legislative and policy needs of the dystonia community. Congratulations to everyone who had a part in this. You have demonstrated that our working together – collaborating on this critical effort – makes a difference and we all have something to celebrate.

Please plan on joining us as we continue our fight for dystonia. The DAC Advocacy Day is scheduled to take place in Washington, DC on May 5 with a training and orientation session planned for May 4th. We look forward to having you there.

Register for Advocacy Day by visiting the following link:
http://www.rsvpbook.com/event.php?470398

Myoclonus Dystonia Meeting

2009-12-14T11:02:00.006-06:00

Pictured above from left to right: Thomas Gasser, MD, Marie Vidailhet, MD and Susan Bressman, MD

This past weekend the DMRF hosted a meeting on myoclonus dystonia, a form of dystonia with symptoms that include rapid jerky movements, alone or in combination with the sustained muscular contractions and postures. We were fortunate to have the leadership of Drs. Susan Bressman and Marie Vidailhet in developing the agenda and bringing together the best faculty in the world to discuss the status of myoclonus dystonia research, clinical and basic, and to develop a plan for keeping the momentum of progress moving forward. Joining the DMRF for this incredible meeting was esteemed researchers from France, Germany, Italy, the Netherlands, the United Kingdom, Canada and the USA. The agenda included a review of genetics, imaging and neurophysiology, therapeutics, and animal models with a discussion on future directions.

In summarizing the meeting, Dr. Bressman said this was the best workshop she had been involved in for many years. We felt the same way – the energy, the enthusiasm and the spirit of collaboration was amazing and we look forward to implementing the plan for attacking myclonus dystonia.

Having these kinds of meetings is an important part of the DMRF’s scientific strategy – implemented and operated by our full time Science Officer, Jan Teller, PhD, and our Medical and Scientific Director, Mahlon DeLong, MD of Emory University. Supporting research, awarding fellowships and contracting for specific scientific work is very important but so too are these meetings when we are able to bring great minds together to discuss a specific topic and develop next steps.

We are so thankful to all who participated in the meeting and to everyone in the dystonia research community for their dedication and commitment to ending all forms of dystonia.

The DMRF: A Critical Piece of the Dystonia Puzzle

2009-12-07T11:44:00.004-06:00

Starting a scientific career is a daunting proposition, especially for a physician-scientist that has clinical as well as lab responsibilities. Yet, it is physicians who witness first hand the struggles of patients, and this knowledge can be a powerful motivator for scientific discovery -- even when the underlying science is unknown and therefore “off the radar” of basic investigators.

The DMRF has provided essential support to my scientific career, both at the critical early stage, as well as at later stages. Shortly after the gene encoding torsinA was discovered, I received a grant from the DMRF to generate torsinA mutant animals. This grant - to a young and untested physician-scientist – was helpful in supporting the work but, perhaps as importantly, gave me an early track record of securing funding and was therefore helpful in me getting other grants, both from the Howard Hughes Medical Institute as well as the NIH. The ongoing support of the DMRF also enabled me to hire and support Rose Goodchild, an outstanding young scientist who now has an independent lab of her own (studying torsinA). Moreover, the DMRF has consistently organized and supported basic science and clinical workshops that have been invaluable in helping to integrate and focus the dystonia research community. I have found these meetings invaluable, both scientifically and as a place where trainees in my laboratory (and others) can begin to present their work and develop confidence as scientists. The DMRF has consistently focused on identifying and supporting the best science, and I’m convinced that we’d be far, far further from our goal of improving the treatment and hopefully cure of dystonia without the many valuable DMRF-supported activities.

Guest Blogger:

William Dauer M.D.
Elinor Levine Associate Professor
Neurology & Cell and Developmental Biology University of Michigan Medical School

Would you like to know more about DMRF grant funding opportunities?
http://www.dystonia-foundation.org/pages/funding_opportunities/142.php

The deadline for all applications is December 15, 2009. Visit http://www.dystoniagrants.org to view the application form.

Dystonia Researchers

2009-10-20T15:32:00.002-05:00

Pictured above are Rose Goodchild, PhD, University of Tennessee and Cris Bragg, PhD, Massachusetts General Hospital

Attracting and keeping smart, dedicated young researchers is really important. Recently the DMRF hosted a meeting of young investigators, bringing together some of the brightest young dystonia researchers to talk about dystonia research and how best to support their work. We wanted to hear from them as to the challenges and opportunities they are experiencing – and how they thought the Foundation could best help young dystonia scientists. We also wanted their ideas on new, perhaps innovative ideas for DMRF research support. It was a very productive meeting with a great exchange of ideas for how we can move forward into 2010 and beyond.

This week the Society for Neuroscience is meeting in Chicago. This is an amazing meeting and in the past few years – dystonia has been present in poster sessions and talks. Having a dystonia presence at this meeting is an accomplishment for all to celebrate. DMRF, along with NSDA, had a booth at the meeting – giving us the opportunity to further promote dystonia at this meeting.

Last evening the DMRF hosted an event where we brought together many members of the dystonia research community – senior level investigators with younger investigators – all talking about what is new in dystonia research, what steps we should look at next and the progress that has been made in the last few years. It was wonderful to see the dialogue between these generations of dystonia researchers, to witness the established investigators encouraging the thoughts and ideas of those investigators beginning their careers.

NIH Awards New Grant to Develop Better Treatments for Focal Dystonias

2009-09-30T16:41:00.004-05:00

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!

2009 Child Neurology Foundation Advocacy Award Recipient

2009-09-23T10:08:00.004-05:00

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!

Insurance Survey Update

2009-09-10T13:13:00.002-05:00

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!

Reflections from the John H. Menkes Children & Family Symposium

2009-08-19T13:30:00.003-05:00

He woke up extra early this morning and said, “Today is the day I finally meet someone else with dystonia!” - comments from the mother of a child attending the symposium

This past weekend the Foundation held its John H. Menkes Children & Family Symposium. Our time together was full of learning, laughing and connecting with one another. We were pleased to have Drs. Michele Tagliati, Jennifer Friedman, Cindy Zadikoff and Vicki Shanker present on the latest dystonia medical information. Guitarist and DMRF Ambassador, Billy McLaughlin treated everyone to a private concert Friday evening and then worked with the younger children Saturday morning in writing a song about living with dystonia. The kids were fabulous. They participated fully in the educational sessions and then fought the Chicago Air & Water Show crowds at the Shedd Aquarium to enjoy an afternoon off-site. Some former “kids” shared tips for how to make the transition to college and living independently with our teens and the parents attending while the siblings of kids affected by dystonia shared their insights on how dystonia has affected their families. When asked what they were most proud of in their family, one tearfully mother replied that she was proud of the courage her daughter demonstrates every day in dealing with dystonia. I would say that everyone who shared in this special weekend left inspired by the courage they see those affected by dystonia, children and adults, show every day.

Dystonia Insurance Survey

2009-08-10T10:12:00.000-05:00

Dystonia Insurance Survey

The DMRF is joining with the other dystonia patient organizations to survey the community on their experience with insurance coverage for dystonia. It is our collective hope that we will be able to identify the gaps and as a community – work toward addressing these so that people will not have to be denied treatment – whether DBS, neurotoxin injections or whatever it is that helps those affected by dystonia to live life to its fullest. We hope you will participate and help to promote participation in the survey. If you do – you will be helping all of us to help so many others.

Below is a link to our online survey.
https://www.surveymonkey.com/s.aspx?sm=CCbhC3M2MF5J3RlSsKKQvg_3d_3d

Thank you!

Dystonia Twitter Awareness Day

2009-07-22T08:59:00.001-05:00

Dystonia Twitter Awareness Day

Calling all Twitter users to come out
and tweet about #dystonia today, July 22, 2009.

http://twitter.com

We are trying to create a #dystonia Twitter Trend
to raise awareness and we need at least 1,000 tweets about #dystonia.

Why the # before the word dystonia?
It makes it easier to search for posts about dystonia.

Join us today and tweet about #dystonia.

Dystonia Twitter Awareness Day

John H. Menkes Children and Family Symposium

2009-07-10T11:43:00.003-05:00

Everyone experiences moments in their lives that they will never forget, people that they will never forget. We carry these moments and people with us, learning what it means to become part of something bigger. For many in the dystonia community the John H. Menkes Children & Family Symposium represents just that – the chance to become a more integral part of the DMRF family.

We invite you to come out and take part in this year’s Symposium, which is scheduled for Friday, August 14th through August 16th in Chicago. Visit http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php for more information and to register.

DMRF Support Group Leader Appreciation Week

2009-06-29T09:45:00.001-05:00

Support group leaders are amazing people. Despite their own challenges in living with dystonia, they work tirelessly to help others affected by dystonia. They are the backbone of the DMRF and the work they do is vital to the Foundation’s mission and our ability to really provide support to patients and their families. We are so pleased to announce that the week of June 29th will be DMRF Support Group Leader Appreciation Week!

It is fitting that this recognition be the week our nation celebrates the Independence Day holiday – as support group leaders are key to supporting those affected by dystonia to achieve independence from dystonia. Through their ongoing efforts support group leaders provide opportunities for education and learning to take place. Every day, these unsung heroes are helping people connect with other people – providing them with a precious gift – knowing that they are not alone in this battle and that the Foundation is here for them and their families. Because of these leaders, many people now know that dystonia does not define them.

Dystonia Insurance Initiative

2009-06-17T15:18:00.004-05:00

It is with great pleasure that I announce the arrival of a new member of the DMRF team – Oxana Zabelina. Oxana is in Chicago working with the Foundation on the challenges of dystonia and insurance. She is currently a graduate student at the University of Massachusetts working on her Master of Public Policy and Administration. Oxana has a PhD in economics from Rostov State University, Rostov- on- Don, Russia.

In addition to her academic qualifications, Oxana completely understands dystonia from her personal experience. She was diagnosed with general dystonia as a child and lived with the twisting, tremors and pain that this disorder brings until the successful DBS treatment she underwent four years ago. Her DBS was highly successful and now she is committed to helping others living with dystonia. We are so fortunate to have the benefit of her dedication and talents as we tackle this important issue.

Oxana is working with the DMRF as an intern – allowing us to implement plans to identify the challenges and successes persons living with dystonia have experienced in getting their treatment covered by insurance. She is currently designing a survey for patients and healthcare providers. We expect to roll out the survey this summer and will announce its availability when ready. In the meanwhile, if you would like to share your insurance stories and welcome her to the DMRF, please feel free to send her an email at: ozabelina@dystonia-foundation.org

Thank you!

2009-06-08T11:58:00.000-05:00

Thank you to all of you who created new awareness last week. Your efforts and your sharing personal stories – is helping to make a difference. Thank you all so much. We are reaching people and you just never know when you will encounter someone else who is aware or who is seeking information. Last week, while making travel arrangements for an upcoming conference, I was speaking with a toll-free operator who wanted to send the confirmation to my email address. When I gave it to her, she paused and said – “My daughter has dystonia and the DMRF website has been so helpful to our family. Thank you.” She went on to tell me the good news of how her daughter is doing (much better) and how grateful she was to have the Foundation’s site as a resource. The personal stories combined with accurate, educational information is what is helpful in creating positive awareness. National Dystonia Awareness Week is over but the need to awareness continues. Keep up the good work and please let us know if we can do anything to support your local efforts.

H. Con. Res 134

2009-06-02T08:36:00.002-05:00

We are grateful to Congressman Danny Davis of IL for his efforts with H. Con. Res 134 expressing the sense of Congress regarding the need for further study of dystonia. This resolution directs the Director of the National Institutes of Health to take a leadership role to fight dystonia. Additionally, this resolution suggests increasing public awareness, biomedical research, patient access to therapies and diagnostic tests to better understand the frequency of dystonia.

Many thanks to Congressman Davis for his ongoing efforts!

National Dystonia Awareness Week

2009-06-01T09:55:00.003-05:00

For more than 30 years, the Dystonia Medical Research Foundation has worked to wipe out dystonia. Our efforts began long before most people, including healthcare professionals, really knew or cared about dystonia. The progress of the dystonia community is directly attributable to those of you willing to share your stories and your insights. Whether it is on television or in a written publication in a large city or a small community, or perhaps as importantly by talking with someone you know or a complete stranger in the checkout line at a grocery store – you are making a difference. Awareness is a process – every piece important, every person’s story contributing to our goal of helping others understand what dystonia is and how we intend to fight it.

This is National Dystonia Awareness Week. We encourage you to continue to tell your stories and then let us know of your activities. Let’s share our awareness experiences and successes with each other. We can’t wait to hear of your activities this week. Each and every interaction is important for together we are making a difference.

Visit http://thedmrf.ning.com or email us at dystonia@dystonia-foundation.org and share your story.

Thank you!

Growing garden...

2009-05-26T13:37:00.002-05:00

My family and I traveled to Michigan over the weekend. While there I had the opportunity to catch up with a long-time friend who owns and operates his family farm. He told me about the challenges of a Midwest spring in getting all of the planting done, how the selection of seed can make a huge difference and the long hours involved. Even once it is all completed there is so much that will influence the harvest – things like the weather that you have no control over and the chance the seeds don’t have the desired yield. There’s a lot of hard work and patience involved, but when the time is right and everything comes together, the yield can be amazing.

This is not unlike medical research. The DMRF works with our fabulous scientific advisors and puts forth great effort to identify the right projects and investigators to invest in. Once approved and the work begins, we have to wait to see what this year’s fields of grants will yield. Our investigators work long hours – you can’t always schedule the right time for the next step in a study. They keep plugging away. The DMRF checks in with the investigators from time-to-time but mostly we have to hope the conditions are right for a good harvest. We have been fortunate to have worked with many of the finest dystonia researchers on the planet, who are working tirelessly for this community.

Think of our research program as the dystonia community garden – where highly selected scientific projects have been planted. Just think, when the timing is right and the conditions just so, imagine what our yield could be! We will keep you posted on how this garden is growing.

Brian's Run

2009-05-22T12:52:00.002-05:00

Many people take running for granted – thinking their legs will go whenever they want – moving. This is not the case for those living with dystonia. This is certainly not the case for Brian Stephenson. Dystonia took control of his body when he was a kid, 12 years old. Similar to the experiences of others, dystonia mysteriously invaded his body. His jaw was affected first. His voice was next and finally his neck. Dystonia not only robbed him of his ability to control his body but also robbed him of much of his childhood.

Like so many living with dystonia, Brian embodies courage and strength. His story inspires. Brian is an accidental hero who proclaims to all, “I run because I can. And I run for those who can’t.”

Several years ago, Brian underwent DBS – traveling from his home in Western MI to Chicago for the surgery and subsequent programming, and then for the treatment of the numerous infections he has experienced. He started running to make a statement about his commitment to living life to its fullest, now that he had control of his body again. With the support of his wife Robyn and his two beautiful daughters, Brian will be running in the Chicago Marathon on behalf of dystonia and the DMRF. He is amazing and his dedication unconditional. Join me in wishing Brian the best of luck in his training for this physical challenge. You can follow his training at his blog: http://dmrfaccidentalhero.blogspot.com

National Organization for Rare Disorders (NORD)

2009-05-15T09:27:00.001-05:00

Yesterday, the National Organization for Rare Disorders hosted a fabulous gathering to discuss how to accelerate the development of new treatments for rare disorders, such as dystonia. The Partners in Progress Rare Disease Summit, held in Washington, DC featured Tommy Thompson, former Health and Human Services Secretary and four-term Governor of Wisconsin, as the keynote speaker. David Kessler, MD, JD, former Commissioner of FDA chaired the summit that also featured presentations by: Janet Woodcock, MD who serves as the Director of the FDA's Center for Drug Evaluation and Research, Michael Astrue, JD, Commissioner of the Social Security Administration, Francis Collins, Former Director of the NIH's National Human Genome Research Inistitute and many other leaders from FDA, industry and healthcare reform.

Dr. Woodcock spoke about the importance of patient organizations being a part of a movement to stimulate the development of new treatments. The DMRF is doing this through the Cure Dystonia Initiative (CDI) and over lunch I was able to describe CDI to Dr. Kessler. During our discussion we also talked about the challenges many advocacy organizations, like the DMRF, face when launching and supporting a translational research program. We hope this discussion will help to engage NORD in supporting organizations like DMRF in our efforts.

You all should know that you are a part of a organization that is committed to achieving our goal of identifying better treatments while we work toward that day when we close our doors because we have a cure. Yesterday, was confirmation that we are on the cutting edge in this effort - and we able to do this because of the support and trust of our members, donors and the DMRF community. Thank you all!

Congratulations to NORD on a fabulous meeting and to Claire Centrella, DMRF's President, who is a member of the NORD Board of Directors.

Changing Keys Wins Platinum at Houston International Film and Video Festival

2009-05-13T14:43:00.001-05:00

The new dystonia documentary, "Changing Keys: Billy McLaughlin and the Mysteries of Dystonia" chronicles the unlikely triumph of guitar virtuoso Billy McLaughlin over focal hand dystonia. Billy was recently appointed a Dystonia Medical Research Foundation Awareness Ambassador for his efforts to increase the visibility of this debilitating neurological disorder.

Congratulations to director Suzanne Jurva and the entire Changing Keys production team for winning top honors, a Platinum Remi Award, at this year's Houston International Film Festival. Changing Keys earned this prestigious award from over 4,300 films submitted to this year's competition.

To catch up on all the press Billy and Changing Keys have attracted to increase awareness, visit http://www.billymacmusic.com/news.shtml

Dystonia Advocacy Day - Recap

2009-05-07T10:19:00.005-05:00

Pictured above: Beth and Joel Farber present Congresswoman Jan Schakowsky of Illinois with the Distinguished Service Award

The Dystonia Advocacy Coalition’s 2009 Advocacy Day was fabulous! Many thanks to the nearly 100 advocates who participated in educating our Members of Congress about dystonia and what they can do to help us achieve our goal of a cure for all forms of dystonia. The training session on Tuesday was successful – as it really prepared advocates for how to present our legislative agenda, how to handle questions but more importantly the time together provided the opportunity for experienced advocates to help first time advocates get more comfortable with what they were going to do. It was wonderful to see these first time advocates at the end of the day, exhausted because of all of the walking between offices in the Senate and the House building and exhilarated by their role in helping these leaders understand what dystonia is and how they can help us to make a difference in the lives of those who live with dystonia every day. Nearly half of our advocates were new this year and all eagerly committed to joining us again next year!

The 2009 DAC Advocacy Coalition Distinguished Public Service Award was presented to the Honorable Jan Schakowsky. The Congresswoman has represented the 9th District of Illinois for the past 10 years and has been a long-time supporter of NIH funding, was important in getting the GINA legislation finally passed last year and is a friend to the dystonia community. Congresswoman Schakowsky and her Chief of Staff Cathy Hurwit joined the DAC advocates for dinner Tuesday evening. We were thrilled to have her with us and to recognize her efforts with the award.

The DAC also welcomed two guests from another national organization who observed the training and the Congressional visits to see how we do this program. They were generous in their comments about how impressed they were to see five different organizations working together in such a focused, concerted way.

We salute all of our advocates, those who were able to join us this week, and everyone who has worked to educate legislators as to the needs of the dystonia community for their tireless efforts!

Pictured above: The IL and ME team just before ‘hitting the Hill’

Personal Testimonies

2009-05-04T10:31:00.002-05:00

Pictured above is Dale Dirks, President, Health & Medicine Counsel of Washington – briefing dystonia advocates

Recently we put a call out for people to share their stories with us and we are thrilled with the response. Thank you to all of you who have written and to all of you who have shared your stories with others so that people can better understand what dystonia is and how it changes the lives of those affected.

Tomorrow the DMRF will join with representatives from the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association to prepare for our Wednesday visits with Members of Congress – to help them learn about dystonia and how they can help us in our mutual goals of wiping-out dystonia. This is an important and exciting annual activity and these five organizations have been working together for the past several years as the Dystonia Advocacy Coalition to make the dystonia messages to our legislative leaders louder and stronger. We will meet to talk about the need for increases in NIH funding, concerns about patient access to treatments/reimbursement for medications, and concerns the dystonia community has regarding proposed follow – on biologics legislation but it is the personal stories the Members of Congress and their staff persons will remember. We are educating these legislators – one shared story at a time and it is making a difference.

We look forward to sharing with you stories from Advocacy Day but in the meanwhile – keep your stories coming.

American Academy of Neurology Meeting

2009-04-30T15:49:00.002-05:00

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.

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

2009-04-29T14:29:00.001-05:00

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 http://www.thedoctorstv.com 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 http://thedmrf.ning.com.

Want to see a clip of tomorrow's show?
http://www.thedoctorstv.com/main/show_page/206

Mahlon DeLong, MD honored for his work

2009-04-23T10:05:00.003-05:00

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.

Billy McLaughlin appointed as DMRF Ambassador

2009-04-17T12:52:00.003-05:00

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 (http://www.tpt.org/).

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

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

2009 DMRF Research Grants

2009-04-15T15:39:00.003-05:00

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

2009-04-13T15:58:00.000-05:00

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.

The John H. Menkes Children & Family Dystonia Symposium

2009-04-08T11:57:00.003-05:00

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.

Our recent webinar

2009-04-02T12:00:00.001-05:00

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!

The Oprah Show

2009-04-01T15:00:00.001-05:00

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.

How Billy's concert went...

2009-03-31T11:08:00.000-05:00

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.

DMRF Webinar

2009-03-23T12:06:00.002-05:00

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.

Changing Keys Documentary

2009-03-19T12:00:00.006-05:00

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

http://www.youtube.com/user/cemiwire!

Want to know more about Billy and Changing Keys?

Visit http://www.billymacmusic.com

Welcome to DMRF Insights by Janet Hieshetter, Executive Director

2009-03-18T12:24:00.010-05:00

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

The 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.

Janet