(New York, N.Y. – October 31, 2013) The Bachmann-Strauss Dystonia and Parkinson Foundation has awarded $1.2 million in matching grants to establish Dystonia and Parkinson's Disease Centers of Excellence at three major U.S. medical centers: the University of Alabama at Birmingham (UAB), the University of Florida (UF) and the University of California, San Francisco (UCSF). The new centers will join the existing Center of Excellence at Beth Israel Medical Center in New York City.
"Proper diagnosis, treatment and comprehensive care have long been missing for people with dystonia and Parkinson's disease," said Bonnie Strauss, president and founder of The Bachmann-Strauss Dystonia & Parkinson Foundation. "As someone who lives with dystonia and struggled for years to find the right diagnosis, the opening of our new Centers of Excellence is a dream come true."
The Bachmann-Strauss centers will strengthen each university's clinical and research infrastructure, while providing a mechanism through which they can share knowledge and collaborate on new initiatives. The new centers are expected to be catalysts for breakthroughs in understanding and treating dystonia and Parkinson's disease. Matching grants will ensure that the centers are self-sustaining.
Additionally, the grants will ensure that patients with dystonia and Parkinson's disease have access to proper diagnosis, treatment and comprehensive care – all coordinated seamlessly in one space. The patients will benefit from an integrated and coordinated approach to multi-disciplinary care that will include ease of access to movement disorder specialists, as well as physical, occupational and speech therapy. Services will also include diverse treatments including neurosurgery and genetic counseling.
Dystonia, which affects as many as 500,000 people in North America, is a movement disorder that causes the muscles to contract and spasm involuntarily. The involuntary muscle contractions force the body into repetitive, often twisting movements and awkward, irregular postures. It can affect the hands, feet, neck or other parts of the body. It may be genetic in origin or appear spontaneously, and dozens of diseases and conditions include dystonia as a major symptom.
Parkinson's disease is a chronic, progressive neurological disorder whose symptoms include tremor, stiffness, difficulty moving, and problems with walking and balance. According to the National Institutes of Health, Parkinson's affects about 500,000 people in the United States although many believe the numbers are higher. (The Parkinson's Disease Foundation estimates that as many as 1 million people are affected). Approximately 60,000 new cases are diagnosed each year. Most cases begin between the ages of 50 and 65, although younger people are affected, too. Currently available pharmacological and surgical treatments provide relief from some motor symptoms, but do not halt the ultimate progression of the disease.
The University of Alabama at Birmingham Comprehensive Parkinson Disease and Movement Disorders Clinic has the only program for movement disorders in Alabama and serves dystonia and Parkinson's patients from Mississippi, Florida, Tennessee, Georgia and Louisiana. The center was designated a Bachmann-Strauss Dystonia and Parkinson's Disease Center of Excellence based on a donation from the Foundation and a matching gift from the family of Mrs. Joel E. Johnson, Jr.
The program at UAB will enhance the access of patients to clinical trials in dystonia and Parkinson disease, and enable conduct of trials, which will advance the fields. The program will also facilitate the interactions between clinicians, basic scientists, and members of the community, and promote cross-culture efforts to translate new discoveries while training the next generation of dystonia and Parkinson disease clinicians and scientists through support of clinical and basic/translational fellowships.
"Dystonia has several forms and may be hereditary or caused by factors such as physical trauma, infection or reaction to a pharmaceutical, however most cases have no known cause," said David G. Standaert, M.D., Ph.D., professor and chair of the UAB Department of Neurology. "Treatment is difficult and has been limited to minimizing the symptoms. At present, there is no cure."
The is a leader in movement disorders and neurorestoration, and patients travel from all over the globe for personalized treatment. The center provides much needed multidisciplinary care to dystonia and Parkinson's patients, bringing together neurologists, neurosurgeons, psychiatrists, genetic counselors, physical therapists and other experts. The center was designated a Bachmann-Strauss Dystonia and Parkinson's Disease Center of Excellence based on a donation from the Foundation and with support from Tyler's Hope for a Dystonia Cure.
Michael S. Okun, M.D., the Adelaide Lackner professor of neurology and the center's co-director said "This funding will galvanize drug discovery, imaging and translational neuroscience and will train the scientists who will make this difference for the patients suffering from these diseases."
The Surgical Movement Disorders Center at UCSF provides state-of-the-art, comprehensive care to patients with movement disorders. The medical staff includes neurologists, neurosurgeons, neuropsychologists, radiologists and nurses who have specialized training in movement disorders. It offers a variety of services that include comprehensive neurological evaluations, medication treatment and disease management, botulinum toxin injections, neurosurgical procedures including deep brain stimulation, and deep brain stimulation programming for conditions such as dystonia, essential tremor, Parkinson's disease, spasticity and chorea.
Jill L. Ostrem, M.D., professor of neurology and medical director of the UCSF Surgical Movement Disorders Center said, "UCSF is very excited to be recognized as a Bachmann-Strauss Dystonia and Parkinson's Disease Center of Excellence. This Center will provide critical support for our busy clinical services and growing research efforts as they relate to dystonia and Parkinson's disease. Optimal results from surgery for Parkinson's disease and dystonia require close integration of neurosurgery, neurology, and nursing care; the new Bachmann-Strauss Center allows us to combine our neurological expertise and the skill Of UCSF's acclaimed Department of Neurological Surgery under Dr. Philip Starr in an impactful and revolutionary way."
I congratulate Drs. Standaert, Okun and Ostrem and their teams for all they have accomplished, and I look forward to working with them in the years to come," Strauss said. "Bringing together some of the world's leading experts in dystonia and Parkinson's disease under one roof will help to ensure that patients receive the best possible care."
About the Bachmann-Strauss Dystonia and Parkinson Foundation
The Bachmann-Strauss Dystonia & Parkinson Foundation is an independent, nonprofit, 501(c)(3) organization that was established in 1995 by Louis Bachmann (1916-2000) and Bonnie Strauss in order to find better treatments and cures for the movement disorders dystonia and Parkinson's disease, and to provide medical and patient information. Key among its efforts, the Foundation funds scientific and clinical research and helps raise awareness of dystonia and Parkinson's disease among the general public and the medical community.
Since its 1995 founding by Bonnie Strauss, The Bachmann-Strauss Dystonia and Parkinson Foundation has given $14 million to seed 225 research projects. The scientists involved were able to leverage that funding to secure an additional $60 million from the National Institutes of Health. For more information please go to: http://www.dystonia-parkinsons.org.
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