to the Pacific Regional Symposium

1. to the Pacific Regional Symposium Sponsors:

2. Shoshana Beran is a 19 year old college student who has DYT1 dystonia. Her symptoms began around the age of 8 with trouble writing and tremor in her hands. Two years later she was diagnosed with dystonia. Her symptoms worsened and spread, over the years, to include her arms, shoulders, neck and stiffness in her hips, back and ankles and unbearable pain. Two & one half years ago, she underwent the Deep Brain Stimulator surgery at UCSF with Drs. Starr & Marks. Within 6 months, she noticed an improvement in her symptoms, and continues to experience benefit today. Shoshana has generously agreed to share her story and answer questions.

3. What is Dystonia? Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures.

4. Dystonia is the THIRD most common movement disorder following Parkinson’s Disease & Tremor and is thought to affect approximately 300,000 persons in North America alone. It is 6 times more common than Muscular Dystrophy and Lou Gehrig’s Disease (ALS).

5. Mitchell Brin, M.D. received his M.D. degree from Columbia University College of Physicians & Surgeons. He completed an internship in medicine at the Mt. Sinai Medical Center, and his neurology & Fellowship training at the Neurological Institute at Columbia University, where he subsequently became an Asst. Prof. & Coord. of the Dystonia Clinical Research Center. In 1994, he joined the staff at Mt. Sinai and subsequently received the Bachmann-Strauss Endowed Chair in Neurology and was promoted to Professor. Dr. Brin has published extensively on movement disorders, and has committed most of his professional life to understanding the genetics of dystonia, finding more effective treatments for dystonia and other movement disorders, and cures for neuro-degenerative disorders. He was one of the first to examine the use of botulinum toxin for the treatment of medical disorders, including dystonia, migraines and also for cosmetic conditions. He is currently the VP of Devel. & Therapeutic Head, BOTOX/Neurology for Allergan, Inc. He maintains his Professorship at UC Irvine with an adjunct Professorship at Mt. Sinai.

6. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.

7. Dystonia is not a single disease, but a syndrome: a set of symptoms that cannot be attributed to a single cause.

8. Deborah De Leon, M.S. received her B.A. in Arts & Sciences from Penn State and an M.S. in Human Genetics at Sarah Lawrence College. She was a researcher at Columbia University and then Beth Israel Med. Center. She coordinated genetic research studies with Stanley Fahn, Susan Bressman and Mitchell Brin, and also with Xandra Breakefield and Laurie Ozelius in the lab. She was on the team that discovered the DYT1 gene. She started the first genetic testing for DYT1. Deborah is board certified in genetic counseling, and has counseled many families with various forms of Dystonia and other neurogenetic disorders, as well.

9. Dystonia is a complex disorder because of its causes, treatment, progression & variability of symptoms.

10. Dystonia is NOT a psychiatric disorder, nor does it affect the intellect. If Dystonia causes any type of impairment, it is due to muscle contractions interfering with normal functioning.

11. Mahlon DeLong, M.D. serves as the Scientific Director of the DMRF. He is the William Timmie Professor and Dept. Chair of Neurology at Emory University School of Medicine in Atlanta. He has played a major role in clarifying the functional organization of the basal ganglia and the role of these structures in the pathophysiology of movement disorders such as Parkinson's disease. He carried out important studies in primate models of Parkinson’s and other movement disorders that provided fundamental insight into the underlying mechanisms of these disorders. His studies helped to renew interest in new surgical approaches in the treatment of movement disorders. Dr. DeLong and his colleagues have carried out major clinical trials of pallidotomy and deep brain stimulation for Parkinson's Disease. Dr. DeLong received a Javitz Neuroscience Investigator Award from the NINDS for his research.

12. Videotapes of today’s Symposium will be made available at a cost of $20 each. Order forms are located at the registration table outside the meeting room. The videos will be mailed to you in the weeks following the Symposium.

13. Kirk Cameron, formerly of the TV show “Growing Pains” has agreed to be a Dystonia spokesperson for the Dystonia Medical Research Foundation (DMRF). This came about as the result of a long-time friendship with a young Dystonia patient.

14. Jennifer Friedman, M.D. is a Movement Disorder Specialist and has been the Director of the Dystonia Clinic at Massachusetts General in Boston since 1998. She completed her B.A. degree at Princeton University and her M.D. degree at Stanford. She did a fellowship in Movement Disorders at Boston University Medical Center as well as a fellowship in Clinical Neurogenetics/Dystonia at Massachusetts General Hospital. She serves as an instructor at Harvard Medical School. She is a member of the Dystonia Study Group as well as the Therapeutics Subgroup with the Dystonia Medical Research Foundation (DMRF). She is currently working on a grant entitled “Motor Learning in DYT1 Dystonia.” Dr. Friedman has just recently relocated to the San Diego area to continue her clinical practice and research.

15. Dystonia Awareness Week-Oct. 11-18, 2003 This week is a special opportunity to join others in a widespread campaign to educate the community about dystonia. Support Groups and volunteers throughout the U.S. and Canada host events, initiate letter writing campaigns, and promote dystonia awareness in creative ways. Please help celebrate Dystonia Awareness Week by making a special effort to raise awareness or fundraise for dystonia research. The Dystonia Foundation is more than happy to provide materials. You can start by displaying your bumper stickers you received today!

16. There are 3 elements to consider in the Classification of Dystonia: 1) Age of Onset 2) Body Distribution 3) Cause

17. Neal Hermanowicz, M.D. is the Medical Advisor for the Pacific Regional Dystonia Patient Symposium. He is Director of the Movement Disorders Program and Associate Professor and Vice-Chair of Clinical Affairs in the Dept. of Neurology at UC Irvine.  Originally from central Illinois, Dr. Hermanowicz received his Bachelor of Science degree from the University of Illinois in Champaign-Urbana. After graduate studies at MIT and Penn State, Dr. Hermanowicz received the MD degree from Temple University School of Medicine in Philadelphia. He then returned to the Midwest for his internship in Internal Medicine and residency in Neurology at the University of Wisconsin.  Dr. Hermanowicz then completed two years of fellowship training in Movement Disorders at the University of Michigan under the direction of Dr. Anne Young & the late Dr. Jack Penney.

18. Robert F. Kennedy, Jr. joins NSDA Board as Honorary Director The NSDA is pleased to announce that Robert F. Kennedy Jr. has agreed to be listed as an Honorary Director of the NSDA. Mr. Kennedy is Chief Prosecuting Attorney for Riverkeeper. Earlier in his career Mr. Kennedy served as Assistant District Attorney in New York City. He is, of course, the son of the late Sen. Robert F. Kennedy.

19. Informal, no-host get-together at Red Robin Restaurant Please join us after the Symposium for an informal, no-host get-together at 6:00 p.m. at the Red Robin restaurant in Irvine Spectrum. If you are interested, please sign up at the registration table in the foyer so that we know how many people to expect. Free shuttle service is available through the DoubleTree Hotel to and from Irvine Spectrum. To make arrangements, check at the front desk in the hotel lobby. Our entire party needs to be at the restaurant no later than 6:00 p.m. to be seated, as things fill up quickly on Sat. night!

20. Mary Hudson-McKinney, DPT, NCS (Neurologic Clinical Specialist) is an Adjunct Assistant Professor of Clinical Physical Therapy at University of Southern California, Los Angeles and a Registered Physical Therapist. She is also a Physical Therapist and Neuro Clinical Specialist for outpatient private practice at England Physical Therapy in Garden Grove, CA. Mary did her undergraduate work at CSU, Northridge, and completed both her Master’s degree, and her Doctorate degree at University of Southern California, Los Angeles with all degrees being in the field of Biokinesiology and Physical Therapy. Mary also worked as a PT/NCS at USC PT Associates, USC University Hospital, and USC Movement Disorders and Parkinson’s Clinic in Los Angeles for a number of years. Mary has a special interest in Physical Therapy for the treatment of Dystonia, which includes utilizing postural control and alignment to help increase ease of movement and decrease pain.

21. DYSTONIA is NOT fatal, but it is a chronic disorder and the prognosis for individual patients is difficult to predict.

22. DYSTONIA does not discriminate and affects persons of ALL ages, races and ethnic groups.

23. Robert McAlister, Ph.D. assumed the post of the Dystonia Medical Research Foundation Executive Director in March 2002. He did his undergraduate and graduate studies at Rice University in Houston, Texas, and his doctorate was in the field of parasite physiology. After a 3-year tour of duty as a Captain in the U.S. Army at Walter Reed Army Institute of Research, he continued his studies on the immunology of malaria for the next 10 years, simultaneously earning tenure and a teaching award at Southern Methodist University in Dallas, Texas. He was then recruited to start the AIDS education and surveillance program in the Oregon Health Division, Portland, Oregon and simultaneously was appointed Clinical Associate Professor of Public Health and Preventive Medicine at the Oregon Health Sciences University. He remained in the public health field for 12 years and then moved to the non-profit arena. He served as Executive Director of the National Eczema Association from 1998-2002 prior to joining the Dystonia Medical Research Foundation.

24. There is currently NO cure for DYSTONIA, but a variety of treatments are available. They include botulinum toxin therapy, oral medications, physical therapy, and surgery.

25. The treatment approach for each Dystonia patient must be very individualized and customized to suit the person’s unique symptoms & needs, as no two Dystonia patients are exactly alike.

26. Martha Murphy is the Leader of the San Diego Dystonia Support Group, a Regional Co-Coordinator for the Pacific and Northwest and also serves as the Pacific Patient Advocacy Director for the Dystonia Medical Research Foundation. She has had Cervical Dystonia for 27 years but was not correctly diagnosed for almost 12 years. Martha is active in a host of Foundation activities including convention representation and symposium organization. Along with her husband and son, Martha appears on the MYOBLOC promotional materials. She is a volunteer at her local hospital and has a B.A. in Sociology with Journalism minor. She is very interested in patient advocacy issues and networking individuals.

27. Unfortunately, Dystonia patients often remain undiagnosed OR are commonly misdiagnosed by the medical community.

28. An accurate diagnosis most often comes from a movement disorder specialist or a competent, knowledgeable neurologist.

29. Giselle Petzinger, M.D. is a Movement Disorder Specialist who completed her fellowship training at Columbia University with Stanley Fahn. She received her M.D. degree at USC and did her residency at Yale. She was at the Parkinson’s Institute for 4 years prior to moving to the University of Southern California where she has been for 3 years. She sees children with movement disorders and works in collaboration with the pediatric neurologists at Children's Hospital, Los Angeles and University of Southern California School of Medicine. She has an interest in animal models of Movement Disorders and a particular interest in understanding brain repair of the basal ganglia (brain structure important in movement disorders) after injury and factors that influence this repair.

30. RESEARCH is ongoing and is crucial in order to identify the cause(s) of Dystonia, develop new & effective treatment options and, ultimately, to discover a CURE! Your DONATIONS are necessary to make this happen!

31. The Dystonia Medical Research Foundation (DMRF) is a non-profit organization that was founded in 1976 in Vancouver by Samuel & Frances Belzberg, after their daughter was diagnosed with Dystonia.

32. Lesilee Rose, Ph.D. is an Associate Professor in the Section of Molecular and Cellular Biology at UC Davis. She received her Bachelor’s degree in Biology at the College of William & Mary, her Doctorate degree in Molecular Biology at Princeton University, and did her post-doctoral research at Cornell University. Dr. Rose is a Dystonia Medical Research Foundation grant recipient and is working on a research study entitled "The OOC-5 Protein, a C. elegans Model for Studying Torsin Protein Function." Dr. Rose’s work may lead to a greater understanding of the function of torsinA, the gene product known to be associated with the DYT1 gene (early-onset Dystonia). She is using the small roundworm, C. elegans, as a model system. This work should help elucidate the intracellular function of torsin proteins in general, as well as identifying new genes whose human homologs could be examined for roles in Dystonia diseases.

33. The mission of the Dystonia Foundation is three-fold: 1) To advance research for more effective treatments &, ultimately, a CURE! 2) To promote awareness & education. 3) To support the needs and well-being of dystonia-affected individuals and their families.

34. Fundraiser Luncheon in Woodland Hills Don’t miss Faye Goldstein’s San Fernando Valley Dystonia Group’s annual “Fall Fantasy Luncheon/Fundraiser” that will take place on Sun., 11/9 in Woodland Hills. The cost is $45 before 10/15. KIRK CAMERON will be the special guest speaker this year. For more information, please talk with Faye, who is here today, call DMRF at 312-755-0198 or visit their web site at www.dystonia-foundation.org and click on Events.

35. Karen Ross, Ph.D. has been a psychologist and family therapist for more than 20 years, as well as a long-time Dystonia Medical Research Foundation (DMRF) Board member. She also recently became Vice President of Support for DMRF. She is the author of the book, Holding the Hope: A Parent's Guide to Living with Dystonia. Karen has an adult son who has early-onset Dystonia. She also recently developed a new relaxation audio program for Dystonia patients & caregivers entitled, Calming the Body, Calming the Mind.

36. Today’s Symposium was made possible, in part, by the generosity of the following sponsors: Allergan, Inc. Elan Pharmaceuticals Laclede, Inc. Medtronic Please stop by and visit their tables in the foyer to thank them and to pick up material.

37. The Dystonia Medical Research Foundation has grown from a small family-based foundation to a membership-driven organization of close to 32,000 persons.

38. David Song, M.D., Ph.D. is currently an Assist. Adjunct Professor, Dept. of Neurosciences at UCSD. Dr. Song is a Board Certified Neurologist and a Movement Disorder Specialist who completed his Fellowship training at Strong Memorial Hospital, University of Rochester Medical Center in Rochester, New York. The Dystonia clinic at the University of Rochester is one of the largest in the United States, caring for over 300 patients on a regular basis. His training included the evaluation and treatment of Dystonia patients, including the administration of botulinum toxin injections. He obtained his undergraduate degree in Biology, Genetics & Development at Cornell University in New York. He received his M.D., M.P.H., and Ph.D. degrees at Tulane University in New Orleans. Current research interests include the role of synaptic proteins in the development of movement disorders and neurodegeneration.

39. The Dystonia Foundation has funded 374 grants or fellowships totaling almost $19 million since its inception in 1976.

40. The DMRF Regional Structure was established 1993, to facilitate support, awareness, and research funding. The U.S. is divided into seven regions and there are four regions in Canada. In each region, coordinators and representatives work with the local support groups and the leadership appointees in the areas of Awareness, Children's Advocacy, Development, Extension, Internet, Leadership, and Medical Education.

41. David Swope, M.D. is an Associate Professor of Neurology and the Clinical Director of Movement Disorders in the Department of Neurology at Loma Linda University Medical Center in Loma Linda, CA. Dr. Swope earned his M.D. degree and completed his Neurology Residency at Loma Linda University, Loma Linda School of Medicine. He did his Fellowship training in Movement Disorders at Mt. Sinai Medical Center in New York. His research interests include Parkinson’s Disease and Dystonia. He has conducted a number of clinical research trials involving Parkinson’s patients, as well as clinical trials using Botox to treat migraines and Dystonia. He is a member of the American Academy of Neurology and the Movement Disorders Society. Dr. Swope has contributed to a number of publications in the field of Neurology and Movement Disorders.

42. Mental Health Referral List We are compiling a Referral List of Mental Health professionals and would appreciate it if you would contact the DMRF with the names and pertinent information of any therapists who you feel are qualified to work with Dystonia patients. In turn, we will send the therapist a form for them to fill out and return if they are agreeable to being included on our referral list.

43. Physician Referral List If you are aware that your physician is not on the DMRF healthcare referral list and feel that he/she should be included, please get in touch with DMRF with the MD’s name and contact information so that a form can be sent to that person.

44. Zeba Vanek, M.D. is an Assist. Professor of Neurology at UCLA and Director of the UCLA Spasticity Clinic for the Movement Disorders and Parkinson’s Disease Program. Her clinical practice and research focuses on the management of Parkinson’s disease, tremors, dystonias, other movement disorders, and spasticity. She also runs a Botulinum Toxin Clinic at UCLA in which various movement disorders and pain syndromes are treated. Dr. Vanek obtained her medical degree from the Dow Medical College in Karachi, Pakistan, received her postgraduate fellowship training in movement disorders at Queen Square Institute of Neurology, London, and did her neurology residency at the Baylor College of Medicine in Houston. Her recent focus is on the management and treatment of movement disorders and spasticity problems which includes the use of botulinum toxin injections (Botox and Myobloc).

45. Musicians with Dystonia was founded in 2000 by professional French Horn player Glen Estrin and Steven Frucht, M.D., a neurologist at Columbia-Presbyterian Medical Center in NYC. The group is dedicated to serving the special needs of musicians affected by task-specific focal dystonia, particularly hand and embouchure dystonias. Glen Estrin is our lunchtime speaker today and will share his fascinating and inspiring story with us.

46. On-Line Dystonia SupportSupport is a critical piece to understanding and dealing with dystonia. The Internet serves as a valuable resource to people with dystonia who would like to communicate and share with others who have the disorder. These "on-line" services act as a support network which are available 24 hours a day, seven days a week. To learn more about the various Dystonia Bulletin Boards log onto www.dystonia-bb.org

47. Ryan Murphy is our symposium A/V Coordinator/Technician and in charge of all of the technical aspects of the symposium. He will also be videotaping this event. Ryan is attending college and majoring in Media Communication. Ryan is also Symposium Co-Coordinator Martha Murphy’s son.

48. Thank you for joining us today! We hope that you will find the information useful and encouraging and that you will have the opportunity to have your questions addressed as well as meet and share with others in the Dystonia community.