by Kelly Flowers
When a person or a loved one is afflicted with a debilitating disease that is not common, the greatest challenge is often finding a doctor with appropriate expertise and gaining access to a specialized health care team with the right experience. Patients and families often travel all over the country and even the world to ensure they’re receiving the best care possible to manage or potentially cure their condition. For those who suffer from dystonia, a painful movement disorder that causes the muscles to contract and spasm involuntarily, that high standard of world-class care has just been recognized right here in Gainesville. The University of Florida Center for Movement Disorders and Neurorestoration has been awarded a grant and an official designation as a Center of Excellence by Bachmann-Strauss Dystonia and Parkinson Foundation.
Austin Streitmatter had DBS Surgery in the late fall of 2011 at the Movement Disorders Clinic at UF Shands, under the direction of Dr. Michael Okun and Dr. Kelley Foote. This video tells the story of his
Michael S. Okun, Adelaide Lackner professor of neurology and co-director of the UF Center for Movement Disorders and Neurorestoration, said, “This designation is significant not only because it recognizes that we provide the highest level of patient care, but because there was rigorous competition across the United States for this award, and we were one of only four programs in the country that was selected. We are very proud of this designation.”
The Bachmann-Strauss Foundation is a major national foundation that supports both dystonia and Parkinson’s research and care. The foundation funds scientific and clinical research and helps raise awareness about Parkinson’s disease and dystonia among the general public and the medical community.
“The designation as a Center of Excellence and the grant money that the foundation has awarded our center will allow us to set up a true interdisciplinary program specifically for dystonia patients, and it provides funds for a fellowship program to train future generations of dystonia researchers, “Okun said. “This award is the perfect synergy for us, since we already had the Tyler’s Hope for a Dystonia Cure Center in place, and this clearly affirms the position of UF as one of the world’s powerhouses in dystonia care and research.“
When The Bachmann-Strauss Foundation was selecting top centers in the country, it chose places with national and community partners that could provide strong, additional support. Tyler’s Hope for a Dystonia Cure, a non-profit foundation based in Gainesville that raises money and awareness for dystonia, provided the community support that The Bachmann-Strauss Foundation considers important to the success of a Center of Excellence.
Tyler’s Hope was established in 2005 by Gainesville residents Rick and Michelle Staab in response to the diagnosis of their son, Tyler, and their daughter, Samantha, with DYT1 dystonia. The organization has already raised several million dollars and is matching the $400,000 grant from The Bachmann-Strauss Foundation with local funds.
Okun explained that the Staabs and Tyler’s Hope have played a major role over the last eight years in helping advance research to find a cure for dystonia. In addition to raising funds, the organization has sponsored think tanks that have brought the best researchers from around the globe to UF, and these efforts have greatly expanded the scope of dystonia research and filled critical knowledge gaps.
Rick Staab said, “The designation of the UF Movement Disorders Center as a Bachmann-Strauss Dystonia & Parkinson’s Disease Center of Excellence is a wonderful confirmation of what we are doing here at UF. To be chosen by such a well-respected organization and to work in collaboration with a great visionary and founder (Bonnie Strauss) solidifies our standing in the medical community worldwide.”
“Throughout our family’s tragedy, the UF Center has been a blessing and has made our lives much better,” Staab added. To have this center so close to home and in our community has helped us deal with the daily struggles of dystonia. I truly believe that this center is the best in the world and the team of doctors and other specialists are the very best.”
With the money from The Bachmann-Strauss Foundation and the matched funds from Tyler’s Hope, Okun explained that the UF Center has been able to assemble a “dream team” of top researchers to try to make large-scale discoveries in dystonia that could have a huge impact on patient care. The research team is achieving milestones, such as developing and testing new drugs to treat dystonia symptoms and seeing how those drugs act in the brain by using advanced imaging techniques.
The Bachmann-Strauss Foundation’s grant will also help to fund a full-time research coordinator who is dedicated to finding cures for dystonia and Parkinson’s disease. In addition, the grant will fund the continued development of pioneering techniques in Deep Brain Stimulation performed by UF neurosurgeon and Movement Disorders Center Co-Director, Kelly Foote, M.D.
“Our goal is not only to provide world-class, one-stop-shop care for dystonia and Parkinson’s patients, but we really want to shift the field toward smarter and better therapies,” Okun said.
UF Health Center for Movement Disorders and Neurorestoration
The UF Health Center for Movement Disorders and Neurorestoration was established in July 2002 to bring together UF doctors and researchers with special expertise in Parkinson’s disease and other movement disorders. Since its creation a decade ago, the Center has treated nearly 7,000 patients, the majority of whom continue to be followed in one of the largest research databases in the world. The center caters to patients from across the country, and from far away places such as Nepal, Abu Dhabi, Europe and much of Central and South America. The center has become well known for its deep brain stimulation (DBS) program, which has implanted nearly 1,000 DBS systems, and is the world’s leading center for the evaluation of DBS failure.
National Parkinson Foundation Center of Excellence
In addition to being a newly-designated Bachmann-Strauss Dystonia & Parkinson’s Disease Center of Excellence, The Center for Movement Disorders and Neurorestoration has been named a National Parkinson Foundation Center of Excellence, which offers a range of signature interdisciplinary programs that improve the lives of patients with Parkinson’s disease. Okun has served as National Medical Director for that foundation since 2006, and again sees the synergy with Bachmann-Strauss as better for the patients and better for the researchers.
Bachmann-Strauss Dystonia and Parkinson Foundation
Founded in 1995 by the late Louis Bachmann and his daughter, Bonnie Strauss, The Bachmann Strauss Dystonia and Parkinson Foundation was started to encourage new scientific research in the fields of dystonia and Parkinson disease and to heighten awareness about the diseases. The foundation is also the leading organization actively looking at the interface between dystonia and Parkinson’s disease. Early stages of scientific research are often the hardest to fund. Following a similar concept to that of a “venture capital” fund, seed money is funded through annual grants, which help to leverage new ideas and advances in the fields. To date, the foundation has allocated over $14 million to 225 grants in the U.S. and abroad.
Integrated Care
To facilitate a high level of integrated care, the Center for Movement Disorders and Neurorestoration coordinates all patient services from one central location at the University of Florida. The unique interdisciplinary patient care approach brings together UF faculty and researchers from specialties including:
• Neurology • Neurosurgery • Psychiatry • Radiology/Imaging • Clinical and Health Psychology • Physical and Occupational Therapy • Rehabilitation Medicine • Applied Physiology and Kinesiology • Epidemiology and Health Policy Research • Nuclear and Biomedical Engineering• Communication Sciences and Disorders • Neuroscience • Gait and Balance • Speech and Swallowing • Neuropsychology • Engineering • Biostatistics