Courage and Persistence

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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...

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

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)

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

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

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

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

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

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

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

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

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


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


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


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

Science

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

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

The John H. Menkes Children & Family Dystonia Symposium

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


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


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

Our recent webinar

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

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

Check the website for upcoming webinars too!

The Oprah Show

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

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

How Billy's concert went...

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

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

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

Thank you Suzanne for making this wonderful film.

DMRF Webinar

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

I'll blog later on how it goes.

Changing Keys Documentary

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

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

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

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