By: Grace Huff
September marks Dystonia Awareness Month, a time to raise awareness about dystonia, the third most common movement disorder after Parkinson’s disease and essential tremor. For nearly two decades, the Norman Fixel Institute for Neurological Diseases at UF Health has shared this mission through a robust partnership with Tyler’s Hope for a Dystonia Cure.
A family’s journey inspires a movement
In 2005, Tyler, a healthy, active 7-year-old, began experiencing uncontrollable arm movements. After months of painful tests and misdiagnoses, he was eventually evaluated at UF by Michael Okun, MD, who confirmed a diagnosis of Primary Generalized Early-Onset Dystonia caused by a mutation in the DYT1 gene. Soon after, his sister Samantha was diagnosed as well.
Faced with the life-changing reality of this neurological disorder, Tyler’s family transformed their struggle into action, founding Tyler’s Hope for a Dystonia Cure in 2006. Their mission was clear: raise awareness, accelerate research, and ensure no other child or family endured the same diagnostic challenges they had faced.
Establishing the first center of excellence
In 2008, Tyler’s Hope designated the University of Florida’s Norman Fixel Institute for Neurological Diseases as its first Center of Excellence. This recognition underscored UF’s leadership in dystonia research and its dedication to comprehensive, patient-centered care.
The Center provides a multidisciplinary model of care. Patients can schedule multiple services in one visit, such as neurology, neurosurgery, psychiatry, psychology, speech, swallowing therapy, physical and occupational therapy, nutrition, and social work. This interdisciplinary approach ensures that every patient receives seamless, holistic support. The Center of Excellence also serves as a training ground for the next generation of dystonia specialists, offering resources and fellowship opportunities that expand expertise across neurology and related fields.
Advancing research and care together
The collaboration between Tyler’s Hope and the Fixel Institute has advanced both scientific discovery and patient care. Research at UF, supported by Tyler’s Hope, has helped uncover new genetic and biological mechanisms of dystonia while exploring cutting-edge therapies like deep brain stimulation (DBS), biofeedback, and rehabilitation-based interventions.
Tyler’s Hope has invested in funding research awards and fellowships to support innovative projects at UF and beyond. Recent awardees include:
- Josh Wong, MD: Towards AI-guided botulinum toxin injection for cervical dystonia
- Mark Moehle, PhD: Dissecting Basal Ganglia and Cerebellar Pathways Necessary to Cause Dystonia
- Bradley Wilkes, PhD: Cellular and Brain Network Function in a Novel Genetic Model of DYT1 Dystonia with Overt Dystonic Symptoms
- Christopher Hess, MD: Tyler’s Hope Foundation Dystonia Fellowship (2024–2025)
- Cora de Hemptinne, PhD: Evoked Resonant Neural Activity to Guide Deep Brain Stimulation for Dystonia
- Yuqing Li, PhD: Dopaminergic Contribution to DYT11 Dystonia and Preclinical Drug Testing
- Rajesh Khanna, PhD: Targeting Na V 1.7 for the Alleviation of Chronic Pain in Parkinson’s Disease and Dystonia
These investments accelerate discovery and expand the pipeline of talented scientists and clinicians dedicated to curing dystonia.
The Dystonia Think Tank
A cornerstone of this partnership is the Dystonia Think Tank, an annual gathering hosted by the Fixel Institute in collaboration with Tyler’s Hope. This pioneering event brings together leading neurologists, researchers, industry leaders, and patient advocates from around the world to:
- Advance scientific discovery and investigate genetic causes and novel therapies.
- Enhance patient care and develop new interdisciplinary treatment models.
- Develop new therapies and explore drug targets and neuromodulation strategies.
- Foster collaboration and build global partnerships across institutions and organizations.
By creating an elite collaborative space, the Think Tank accelerates the translation of laboratory breakthroughs into real-world impact for patients. The discussions directly influence research funding priorities, clinical trial development, and advocacy strategies.
The Fixel Institute looks forward to hosting the next Think Tank with excitement for another year of groundbreaking dialogue and action.
A shared mission for the future
Today, dystonia remains a chronic and often misunderstood condition that affects more people than Muscular Dystrophy, Huntington’s Disease, and ALS combined. Through Tyler’s Hope and the Fixel Institute’s shared mission, hope for better treatments, and ultimately a cure, is stronger than ever.
Partnerships like this one are essential to turning scientific breakthroughs into real-world impact for patients and families.
This Dystonia Awareness Month, the Fixel Institute is proud to stand alongside Tyler’s Hope in their tireless commitment to awareness, advocacy, and discovery.