By Hubert H. Fernandez, MD, Medical Editor, MDS Website
1. How did you get involved in your specific area of Movement Disorders and your organization?
"I have always been fascinated by movement disorders, and in particular Parkinson's disease. I share the curiosity of many including Shakespeare who wrote, "why dost thou quiver man." Basal ganglia disorders and particularly Parkinson's disease are a true love for me, and my interactions with patients, families, and colleagues have been a blessing. I have always been the kind of person who enjoys volunteering and particularly working for charity organizations. I had the opportunity a few years ago to become the National Medical Director for the National Parkinson Foundation, and this has proven to be a true honor and privilege. I have become personally moved by the patients and caregivers who write in on a daily basis to our Ask the Expert website forums. I now recognize that Parkinson's disease is a problem of epidemic proportions, and I hope that in my capacity as the Medical Director I can help as many people as is humanly possible."
— Michael S. Okun, MD, Medical Director, National Parkinson Foundation
"I went into neurology with an interest in motor control and movement disorders. I suppose I got particularly interested in focal dystonia because of focal hand dystonia, including musician's dystonia. Blepharospasm was a natural extension. Somehow, I don't know exactly, Mattie Lou Koster found me and asked me to participate as a "peer reviewer" for blepharospasm grants to the BEBRF. From that job, I was quickly promoted to the Medical Advisory Board, and then to its Chairman."
— Mark Hallett, MD, Chair, Scientific Advisory Board, Benign Essential Blepharospasm
"The International Essential Tremor Foundation (IETF) was founded by Bill Koller in 1988, and I joined its Medical Advisory Board with a number of colleagues who shared an interest in bringing information and support to both the patient and physician communities. At the time and even today, the term essential tremor was often preceded by the adjective "benign" - which, at its best, it can be - but I recall that the goal of the organization at its founding was to heighten understanding that this disorder was more than a minor inconvenience. It's amazing what has occurred in the past two decades since the founding of IETF - the development of several medications offering symptomatic relief, the advent of deep brain stimulation, animal models of essential tremor, genetics research aiming to find responsible genes, pathological studies showing previously unexpected changes in the brain, neuroimaging and electrophysiological studies targeting where tremor originates - the list could go on and on. The diversity of services from IETF is readily apparent from its website (essentialtremor.org) and the supportive services provided by its office in Lenexa, Kansas, USA under the guidance of its Executive Director, Catherine Rice. Like other Medical Advisors, I have participated in helping to shape its policies, providing articles for its newsletter, and helping to review grants for essential tremor research that the IETF has funded ($336,000 so far!)."
— Peter A. Lewitt, MD, President, Board of Directors, International Essential Tremor Foundation
"My interest in dystonia was a natural evolution of my research interests in the basal ganglia and my clinical interest in movement disorders. Early in my research career I submitted several grant proposals to the newly formed foundation and received funding for several of these. This support was extremely helpful. I later served several stints on the Scientific Advisory Board of the foundation under the direction of Dr. Charles Markham, before being asked to become Scientific Director. I was greatly honored and most pleased to accept, since I had very much enjoyed my rotations on the Scientific Advisory Board and found the experience most rewarding and broadening, in particular as regards the importance and vital role of lay organizations and the unique structure of the Dystonia Foundation, with its close interaction between Board members, staff and Scientific Advisory Board members."
— Mahlon DeLong, MD, Scientific Director, Dystonia Medical Research Foundation
2. What is the main purpose of your organization and where do you see your foundation going?
"The NPF has pushed over $100 million into Parkinson's disease care, outreach, and research since 1957 when Mrs. Jeanne C. Levey founded the organization. NPF's niche has been developing Centers of Excellence and providing outstanding care and models of care delivery. When Mrs. Levey founded NPF there were no effective treatments for Parkinson disease, but by 1979 the field had really grown. It was then that Chairman Emeritus Nathan Slewett transformed a budget that was measured in thousands of dollars to one that would give out millions each year. NPF has given many of the major clinicians and researchers their start in the field of Parkinson's disease."
I see the NPF as an organization that has the potential to create a worldwide shift in how we deliver Parkinson's disease care, and how we develop and implement Parkinson's disease quality of care indicators. The NPF has some really world class programs: 1) 59 Centers of different varieties (care, research, outreach) around the world; 2) a unique niche in care and care delivery; 3) clinical research into the science of care delivery; and, 4) Allied Team Training (training multidisciplinary/interdisciplinary teams around the world).
— Michael S. Okun, MD
"The BEBRF has two main goals. One is to educate and support patients with blepharospasm and hemifacial spasm. The other is to support research. Research is supported by a small grant program and periodic international workshops. In recent years, our foundation is getting more involved in a coalition of all the dystonia groups."
— Mark Hallett, MD
"The IETF continues to grow in the services it provides to its membership. Although struggling like most non-for-profit organizations that depend on donations, IETF has achieved a place in the international movement disorder community by providing a focus of information and support for patients and their families. Through its website, newsletter, other publications, regional meetings, and services in personally answering the questions sent or phoned to it, the IETF staff has the mission of making life better for essential tremor sufferers. Raising funds and supporting research into causes, treatments, and better understanding of essential is another goal. Although the membership of IETF numbers in the tens of thousands, there is still the challenge of expanding its information and support services beyond its current boundaries. MDS members who take a look at the IETF website or its publications can feel confident that a referral to IETF will enhance the lives of their patients with this disorder."
— Peter A. LeWitt, MD
"For more than 30 years the DMRF has been funding research on the dystonia. The core mission of the Dystonia Medical Research Foundation is to promote and support both basic and translational research into the causes and mechanisms of the dystonias. Increasingly over the years the foundation has played a major role in sponsoring scientific meetings and workshops, providing patient and family support and advocating in behalf of dystonia at the federal and NIH level.
Recognizing the need for leadership in accelerating the development of more effective treatments, the DMRF has recently established the Cure Dystonia Initiative (CDI). As other lay organizations have done, the foundation has essentially adopted a business approach to the development of therapies, first enlisting the help of individuals from the bio-pharmaceutical industry who possess the specialized talents and expertise to help plan and oversee therapeutic initiatives, recruiting the necessary professional experience, and modeling our efforts on the best practices within the newly emerging world of profit/non-profit partnerships. The CDI approaches dystonia as a drug discovery and development problem, providing direction, management and seed funding for projects aiming directly at the development of new therapeutics, while helping to create formal and informal partnerships between academia, federal institutions and biopharmaceutical companies."
— Mahlon DeLong, MD
3. What would you like to have accomplished during your tenure? What are your (or your foundation's) most important goals?
"My agenda as National Medical Director has been simple. People are the NPF's greatest resource. We need to develop our people, and work to realize the collaborative potential of our programs. The development of collaborations within the field, and the exportation of brilliant ideas and findings are top priority for me. I hope what we discover through our funding will reach patient's worldwide. I am in favor of continuing to sharpen our focus, and to work in synergy with all of the other foundations so that services and funding are not duplicative. Finally, I look forward to working with our new CEO Joyce Oberdorf to fulfill her vision and roadmap for success in Parkinson's disease through the dispersing of NPF dollars."
— Michael S. Okun, MD
"Of course, we all want to find the "cause and cure." Right now one of the emphases is on trying to identify relevant genes that cause blepharospasm."
— Mark Hallet, MD
"My personal goals have been to work with a dedicated Board of Directors in providing financial stability and the best focus for using the Foundation's limited resources to have the maximum impact for essential tremor sufferers. The annual growth of services, thanks largely to the dedicated staff at the IETF headquarters, has been extremely satisfying."
As for our foundation's most important goals, they are, quite simply, providing the authoritative resource of information and caring that essential patients can count on. Of course, it would be nice also for the IETF to have a role in discovering better treatments and other research goals.
— Peter A. LeWitt, MD
"During my tenure as Scientific Director I have had the great satisfaction of seeing a tremendous transformation of the organization from a small family-based foundation focused largely on basic research into a dynamic, multifaceted membership-driven organization with a major focus on translational as well as basic research and greatly expanded efforts in awareness, education, advocacy and patient support. In addition to the research mission, I strongly believe that lay foundations such as ours have a critical role in identifying and supporting new instigators by providing fellowship support, seed grants and, in special cases, bridge funding. It has also been my strong view that it is critical that both researchers and the multiple dystonia lay organizations work as closely as possible on common goals and see themselves as partners rather than competitors in the effort. To these ends the foundation has worked closely with the NINDS and the other relevant NIH Institutes not only to increase research funding, but also to provide support for young investigators and has played an active role in bringing together individual researchers and the various dystonia lay organizations."
— Mahlon DeLong, MD
4. How can the Movement Disorders Society help in your cause?
"The Movement Disorders Society and its members play a critical role in "getting the word out," about NPF, its mission, and its resources. The members of the society are on the front line with patients and also serve as the leading clinicians and researchers in the field. We want them to make people aware that NPF is there to help, and to remind them that we have many resources such as our free, Ask the Expert Web forums that we would be more than pleased for them to utilize."
— Michael S. Okun, MD
"It will be a tremendous help if the MDS and its members can continue to support the education of movement disorder doctors in the proper care of patients with blepharospasm, and to help facilitate research. It is also valuable for the MDS to continue to allow the lay foundations to exhibit at the meetings without charge."
— Mark Hallett, MD
"I would encourage MDS members to join IETF as professional members, to obtain IETF brochures for your offices, and to encourage essential tremor patients to join this organization (which can be accomplished by mail, by telephone, or through the website)."
— Peter A. LeWitt, MD
"The MDS is a valuable partner with the Dystonia Foundation and the cause of dystonia by providing continued representation of dystonia research at the yearly meetings, supporting satellite scientific meetings and work sessions on dystonia and related topics, and being a strong advocate for the field. The MDS, with its international scope, can help with collaborations between the US-based dystonia foundations and their international 'sister' organizations."
— Mahlon DeLong, MD
About Michael Okun
Michael S. Okun, MD, received his B.A. in History from Florida State University, and his M.D. from the University of Florida. Dr. Okun completed his Neurology residency at the University of Florida, then trained at Emory University in both general movement disorders and in microelectrode recording/surgical treatments. He is currently Co-director of the Movement Disorders Center located within the McKnight Brain Institute and the University of Florida College of Medicine.
Dr. Okun has been supported by grants from the National Parkinson Foundation, the National Institutes of Health, the Parkinson Alliance, and the Michael J. Fox Foundation for Parkinson's Disease Research, and he currently runs the online international Ask the Expert forums on the National Parkinson Foundation website. Dr. Okun holds the Adelaide Lackner Associate Professorship in Neurology, has published over 100 peer-reviewed articles, is a published poet (Lessons From the Bedside, 1995), and has served as a reviewer for more than 25 major medical journals.
About Mark Hallett
Dr. Hallett obtained his M.D. at Harvard University and trained in Neurology at Massachusetts General Hospital. He had fellowships in Neurophysiology at the National Institutes of Health and at the Institute of Psychiatry in London. From 1976 to 1984, Dr. Hallett was the Chief of the Clinical Neurophysiology Laboratory at the Brigham and Women's Hospital and Associate Professor of Neurology at Harvard Medical School. From 1984, he has been at the National Institute of Neurological Disorders and Stroke where he serves as Chief of the Human Motor Control Section and pursues research on the Physiology of Human Movement Disorders and other problems of Motor Control.
He also served as Clinical Director of NINDS until July 2000. He is past President of the American Association of Electrodiagnostic Medicine and the Movement Disorder Society. He also served as Vice-President of the American Academy of Neurology. He is an Associate Editor of Brain and has just taken over as the Editor-in-Chief of World Neurology. His interests in Motor Control are wide-ranging, and include brain plasticity and its relevance to neurological disorders and the pathophysiology of dystonia, parkinsonism, and myoclonus.
About Peter LeWitt
In 1989, Dr. LeWitt was appointed Professor of Neurology at Wayne State University School of Medicine in Detroit, Michigan. Dr. LeWitt directs the Parkinson's Disease and Movement Disorder Program at Henry Ford Health Systems, and a laboratory research program investigating the mechanisms of neurological disease and early diagnostic markers. Dr. LeWitt is the author of more than 300 publications on clinical and basic neuroscience. Dr. LeWitt is President of the International Essential Tremor Foundation and the Michigan Parkinson Foundation, and has directed the National Parkinson Foundation's Center of Excellence in Michigan. He has been elected secretary of the Movement Disorder Society. In 2003, he was appointed as Editor-in-Chief of CLINICAL NEUROPHARMACOLOGY. His undergraduate, research, and medical education is from Brown University, with additional post-graduate medical and research training at the University of Pennsylvania School of Medicine, Stanford University School of Medicine, and the National Institutes of Health.
About Mahlon DeLong
Dr. DeLong is the William Timmie Professor of Neurology. Dr. DeLong was Chairman of the Department of Neurology at Emory University School of Medicine from 1990-2003. He has played a major role in clarifying the functional organization of the basal ganglia and the role of these structures in movement and the pathophysiology of movement disorders such as Parkinson's disease. His studies have led to the development of new and highly effective surgical approaches for the treatment of movement disorders. Dr. DeLong has carried out numerous controlled clinical trials for the surgical treatment of movement disorders.
Among numerous awards, Dr. DeLong received a Javitz Neuroscience Investigator Award from the NINDS for his research, and the Alfred E. Springer Award by the APDA and was elected to membership in the Johns Hopkins Society of Scholars and the Institute of Medicine. He was recently selected as the first recipient of the Deans Distinguished Faculty Award and Lecturer at Emory. Dr. DeLong is Chair of the Society for Neuroscience, Government and Public Affairs Committee. He served on the Advisory Council of the NINDS from 1996-2000. He serves on the Editorial Board of several scientific journals and government and private foundation advisory panels.