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Fifty-Three Organizations, Healthcare Professionals, Patients Join Forces to Urge Lawmakers to Improve Care for the More Than 40 Million Americans Living With Debilitating Neurological Conditions

Posted on: Thursday, 14 September 2006, 09:00 CDT

WASHINGTON, Sept. 14 /PRNewswire/ -- The Life in Motion Movement Disorder Patient Summit convened congressional representatives, physicians, patients and caregivers today on Capitol Hill to discuss ways of improving care for the more than 40 million Americans affected by movement disorders -- chronic and debilitating neurological conditions, affecting more than twice the number of people with diabetes and more than four times the number of those surviving cancer.

During today's event, lawmakers were urged to educate their constituents about movement disorders in order to reduce the amount of time it takes for a patient to obtain an accurate diagnosis and treatment, which may take upwards of five years and visits to 15 doctors. Prior to the inaugural assembly, more than 4,000 Americans from every state reached out to their Congressional representatives and urged them to attend the Summit.

Congressman Danny Davis (D-IL), the keynote speaker at the Summit and sponsor of legislation to designate October as national Movement Disorders Awareness Month, encouraged his colleagues to distribute educational materials through their local public health centers and their Web sites. "People with movement disorders often struggle with their conditions for years before they are properly diagnosed," Congressman Davis said. "This meeting and Movement Disorders Awareness Month (in October) are meant to call attention to these devastating conditions and demonstrate why resources are needed to help people receive faster diagnosis and treatment."

The Movement Disorders Patient Summit is the latest event in the ongoing education and awareness campaign called Life in Motion. Spearheaded by WE MOVE and launched at the annual meeting of the American Academy of Neurology in 2005, the Life in Motion initiative has united an unprecedented 53 patient advocacy groups, foundations and professional societies to raise awareness about movement disorders such as dystonia, spasticity, tremor, restless legs syndrome, Parkinson's disease, tics and Tourette's syndrome, and Huntington's disease that affect nearly one in seven people in the United States. The Summit brings together lawmakers, patients, advocates, physicians and others to learn about research advancements, treatment options, the latest diagnostic tools, as well as strategies for coping with these disabling conditions.

Following the Summit, participants planned to visit their state representatives on Capitol Hill to brief them on various movement disorders and their personal, societal and financial impact. "Once accurately diagnosed, movement disorders are often treatable, but the lack of awareness may cause patients to live for years with conditions that can result in the loss of one's career, family or independence," commented Daniel Tarsy, M.D., Professor in Neurology, Harvard Medical School and Director of the Parkinson's Disease & Movement Disorders Center, Beth Israel Deaconess Medical Center.

Also speaking at the Summit was Ross Hoffman, M.D., a cardiologist challenged with focal dystonia, involuntary muscle contractions targeting his arm and shoulder. Three years following Dr. Hoffman's diagnosis, he learned his son was afflicted with generalized dystonia, a more severe form of the condition affecting multiple parts of the body. "Researchers are learning that movement disorders may have a genetic component. It is, therefore, essential for families to be open and forthright with their medical histories so that informed and proactive decisions can be made," noted Dr. Hoffman.

Dr. Hoffman, who recently reduced the size of his practice to devote time to raising awareness and finding a cure for dystonia, also spoke on the need for physicians to develop a better understanding of the symptoms of movement disorders as well as the treatments that are currently available, and often underutilized. "Breakthroughs such as treatment with botulinum toxin and deep-brain stimulation have greatly improved the lives of many people affected by movement disorders," Dr. Hoffman noted. "However, further breakthroughs are possible only if we can drive support among the medical community and the public for continued research into these debilitating conditions."

To that end, a key component of the Life in Motion program is the creation of the Movement Disorders Experience Center, an interactive exhibit designed to educate people about movement disorders through the use of devices that "simulate" the challenges a person with a movement disorder encounters each day. The Center, which will be exhibited at hospitals around the country during

October's Movement Disorders Awareness Month, features several conditions including dystonia, Parkinson's disease, tremor, spasticity, and restless legs syndrome. The Center was showcased at the Patient Summit, providing Congressional representatives with an opportunity to experience first hand how living with these conditions may impact daily life.

"The powerful call to action presented at today's Patient Summit makes clear how important it is for researchers, health care professionals, patients and policy makers to continue working together to raise awareness about these serious and debilitating conditions, and to spotlight the need for more timely and accurate diagnosis so that patients get the treatment they need to maintain active and productive lives," commented Brad Gary, Vice President of Government Relations for Allergan, Inc., supporters of the Life in Motion campaign.

About Movement Disorders

Movement disorders originate deep within the brain and are caused by changes to specific regions of the brain and nervous system. Areas of the brain that control movement send chemical messages that set off a chain of events resulting in involuntary muscle contractions or spasms. Why this happens is largely unknown.

Although there are no current cures for movement disorders, many of them can be effectively treated with oral medications; botulinum toxin injection therapy targeted to spastic or abnormally contracting muscles; surgery and physical or occupational therapies. In many cases, combinations of drugs and therapies are used by a multi-disciplinary team of specialists that may include a primary care physician, neurologist, physiatrist, nurse, and physical, occupational, and speech therapist, social worker, teacher, and psychologist.

Life in Motion Resource Center

Additional information on movement disorders, diagnosis and treatment options can be found at the Life in Motion Resource Center at http://www.life-in-motion.org/ or by calling the automated toll-free number at +1-866-LIM-3136 (+1-866-546-3136).

The Life in Motion campaign is sponsored by WE MOVE and funded by an unrestricted educational grant from Allergan, Inc.

About WE MOVE

WE MOVE is a not-for-profit organization that has been educating and informing the movement disorder community for more than a decade. The mission of WE MOVE is to facilitate the communication of emerging clinical advances and therapeutic approaches to the management and treatment of movement disorders. Through its award-winning, HON-compliant Web sites, and as an ACCME-accredited provider of continuing medical education (CME), WE MOVE strives to meet the educational needs of healthcare professionals, patients and caregivers. WE MOVE develops up-to-date training programs and comprehensive, interactive teaching materials to assist the community in deepening its understanding of movement disorders, their pathophysiology, etiology, differential diagnosis and state-of-the-art interventions. WE MOVE believes that increased knowledge and understanding promote timely, accurate diagnosis, and up-to-date treatment, resulting in a better quality of life for individuals affected by movement disorders. More than 160,000 people visit the WE MOVE award-winning Web sites each month to access accurate, timely, and balanced information and resources on movement disorders, http://www.wemove.org/ (consumers); http://www.mdvu.org/ (professionals).

Life in Motion Coalition Members American Academy for Cerebral Palsy & National Spinal Cord Injury Developmental Medicine Association American Academy of Neurology National Stroke Association American Association of Neuroscience North American Brain Injury Nurses Society American Association of Neurological Northwest Parkinson's Foundation Surgeons American Academy of Physical Medicine On-Line SD Support Group & Rehabilitation American Parkinson's Disease Parents of Infants and Children Association, Inc. with Kernicterus American Physical Therapy Association Parkinson Action Network American Stroke Association The Parkinson Alliance Bachmann-Strauss Dystonia and Parkinson Association of the Parkinson Foundation, Inc. Carolinas Benign Essential Blepharospasm Parkinson Association of the Research Foundation, Inc. Rockies Care4Dystonia, Inc. Parkinson's Disease Foundation, Inc. Child Neurology Foundation Parkinson Foundation of the Heartland Child Neurology Society Parkinson Pipeline Project Dystonia Medical Research Foundation Parkinson Study Group Easter Seals People Living with Parkinson's Huntington's Disease Society of Pediatric Neurotransmitter America Disease Association Huntington Study Group Restless Legs Syndrome Foundation International Essential Tremor Rett Syndrome Research Foundation Foundation International Rett Syndrome Society for Progressive Association Supranuclear Palsy, Inc. Movement Disorder Society Spasmodic Torticollis/Dystonia, Inc. Musicians with Dystonia Spastic Paraplegia Foundation, Inc. National Ataxia Foundation Tourette Syndrome Association, Inc. National Multiple Sclerosis Society Tremor Action Network National Organization for Rare United Cerebral Palsy Research Disorders, Inc. and Educational Foundation National Parkinson Foundation, Inc. Well Spouse Association National Spasmodic Dysphonia Wilson's Disease Association Association National Spasmodic Torticollis Association

Life in Motion

CONTACT: Alice Sofield, +1-703-861-5654, asofield@ccapr.com, for Life inMotion

Web site: http://www.ccapr.com/

Source: PRNewswire

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