UF earns ‘center of excellence’ title for movement disorder research

Published: Saturday, September 28, 2013 at 8:16 p.m.
Last Modified: Saturday, September 28, 2013 at 8:16 p.m.

For many medical experts, Gainesville's renown extends far beyond the Gator Nation. The city is also known as "the dystonia capital of the world," said Dr. Michael Okun, a neurologist and the co-director of the Center for Movement Disorders and Neurorestoration at the University of Florida.

And while dystonia might sound like an offshoot Russian republic to many people throughout the world, Okun continued, people here recognize dystonia as a neurological movement disorder causing muscle spasms that can resemble Parkinson's disease.

UF experts, along with a local organization called Tyler's Hope, named after a child with dystonia, have helped put dystonia on the map, not just locally but throughout the world.

On Thursday, they received formal recognition of that reputation with the establishment of a center of excellence for dystonia, thanks to a $1.2 million grant from the New York-based Bachmann-Strauss Dystonia & Parkinson Foundation.

"This is an exciting day for UF Health," Dr. Michael Good, dean of the UF College of Medicine, said Thursday at an inaugural reception for the center of excellence.

Good said partnerships such as that between UF and Tyler's Hope are key to advancing research and treatment for diseases such as dystonia.

"If you look at the places where UF Health does the most outstanding work, there is always a public-private partnership," Good said.

The Bachmann-Strauss Foundation selected the Center for Movement Disorders and Neurorestoration in a highly competitive process to be one of three centers of excellence at academic institutions in the country. The others include the University of Alabama at Birmingham and the University of California-San Francisco.

Bonnie Strauss, who founded the Bachmann-Strauss Foundation after being diagnosed with dystonia herself, said at the reception, "Today is truly a dream come true. Thirty-four years ago, I gave birth to my daughter and shortly thereafter developed dystonia," Strauss said, in a broken voice since she also has developed "dysphonia," a form of dystonia in her vocal chords.

Despite Strauss' symptoms, it took seven years for her official diagnosis.

"I do not want others to suffer what I did," she said.

Dystonia affects about a half million Americans, and an estimated one million more for whom the disorder is part of other diseases such as cerebral palsy, Okun said.

Rick Staab's son Tyler, for whom Tyler's Hope is named, was diagnosed with dystonia eight years ago, when he was 7 years old; his sister Samantha's diagnosis followed a few years later, when she also was 7.

Staab started the foundation because there was little funding for research on the condition, Staab said.

He added that the grant from the Strauss-Bachmann Foundation "will help us do so much more now. It's a huge step."

Contact Kristine Crane at 338-3119 or kristine.crane@gvillesun.com.

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