Tylers hope for a dystonia cure center of excellence
In 2008, Tyler’s Hope for a Dystonia Cure Foundation established its first Center of Excellence at the University of Florida’s Norman Fixel Institute for Neurological Diseases. This Center offers world-class, “concierge-style” care, allowing dystonia patients to seamlessly schedule appointments for all their needs, including social services, physical therapy, psychotherapy, and more. With a commitment to providing comprehensive interdisciplinary care, the clinic has developed unique programs in patient care, education, and outreach, specifically designed for those affected by dystonia.
Center of excellence
This designation is given to an institution for its outstanding efforts in tackling dystonia, a neurological movement disorder. The institution has made significant strides in both scientific research and clinical care, showing a strong commitment to a comprehensive dystonia program that includes interdisciplinary care and translational research. Their notable achievements and the development of crucial infrastructure for both care and research highlight their key role in the field. Additionally, they support expertise in dystonia by offering resources and specialized training through a robust neurology fellowship program.
Our aim with this designation is to serve as a catalyst, inspiring both individuals and institutions within the field to adopt a more ambitious approach to dystonia research. Ultimately, our collective goal is to advance treatments, prevention strategies, and cures for all forms of dystonia, thereby enhancing the quality of life for those affected by this debilitating condition.
We are committed to recognizing and supporting centers that exemplify excellence in dystonia research and care, setting a benchmark for others to emulate. These centers of excellence integrate diverse disciplines including neurology, neurosurgery (such as Deep Brain Stimulation), nutrition, psychology/psychiatry, physical therapy, occupational therapy, and genetic counseling. Through this multidisciplinary approach, we aim to foster comprehensive and innovative solutions for addressing the complex challenges posed by dystonia.
Mission
Our mission is to deliver the highest standard of medical and surgical care to patients with dystonia, while conducting groundbreaking research aimed at developing better treatments and, ultimately, finding a cure for dystonia and other movement disorders.
At the Norman Fixel Institute for Neurological Diseases, dystonia patients have access to a comprehensive, multidisciplinary approach during their visits. Patients can schedule appointments with specialists in neurology, neurosurgery, psychiatry, psychology, speech and swallowing therapy, physical therapy, occupational therapy, and nutrition, as well as participate in various research studies.
The University of Florida team has expanded to include support from:
- McKnight Brain Institute
- Center for Translational Research in Neurodegenerative Disease
- Neurology
- Neurosurgery
- Psychiatry
- Clinical Health and Psychology
- Communication Sciences and Disorders
- Neuroscience
- Biomedical Engineering
- Epidemiology and Health Policy Research
- Applied Physiology and Kinesiology
- Social Work
- Rehabilitation Medicine
- Physical Therapy
- Occupational Therapy
- Nutrition
resources
Click here to visit Tyler's Hope webpage
Support groups and events
Tyler’s Hope Foundation was created to drive research efforts toward finding a cure and effective treatments for dystonia. The foundation is dedicated to raising awareness about dystonia, aiming to ensure that no other child has to endure the long and challenging diagnosis process that Tyler and Samantha experienced.
Join us October 24-26, 2024 for The Hope Weekend
BECOME A SPONSOR HERE or VOLUNTEER HERE
webinar
July 7, 2020 – Webinar Featuring Dr. Michael Okun and Dr. Edgar Rodriguez