Tyler’s Hope raises $100,000 for UF movement disorders research

Tyler’s Hope for a Dystonia Cure presented $100,000 to the UF Center for Movement Disorders & Neurorestoration to establish The Tyler’s Hope Season of Hope Fellowship for clinical training and research in dystonia, Parkinson’s disease and movement disorders. Photo by Maria Belen Farias

Tyler’s Hope for a Dystonia Cure has presented $100,000 to the UF Center for Movement Disorders and Neurorestoration to establish The Tyler’s Hope Season of Hope Fellowship for clinical training and research in dystonia, Parkinson’s disease and movement disorders.

“The money will establish a yearly fellowship, so we will be able to meet that critical need for more specialists in dystonia and Parkinson’s disease,” said Michael S. Okun, M.D., co-director of the Center for Movement Disorders and Neurorestoration.

The gift was announced Friday, March 16, at the 5th annual Think Tank on Novel Approaches to a Cure for DYT-1 Dystonia at the McKnight Brain Institute of the University of Florida. Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily.

The money for the fellowship was raised during the past two Season of Hope 5K/ 15K Runs sponsored by Tyler’s Hope and the Center for Movement Disorders. The events, held during December in Gainesville, attracted about 200 runners in 2010 and more than 300 in 2011.

“Dr. Okun and his team deserve all the support we can give. I think they have the best place in the world for these movement disorders,” said Rick Staab, president and founder of Tyler’s Hope. “The fellowship will enhance what’s already the best, and it gets new generations involved in this research.” 

A gift was also presented to Rick and Michelle Staab and Leslie Okun for organizing the Season of Hope runs.

The Staabs have two children with dystonia who have received treatment at the UF Center for Movement Disorders. Their son Tyler, 14, and daughter Samantha, 11, were diagnosed with the condition when they were 7 and have undergone deep brain stimulation, a surgery that has enabled them to walk.

Samantha was one of the participants in the second Season of Hope 5K/15K Run. But only a year before, Samantha was in a wheelchair and had a hard time even sitting up straight because her body was so twisted. After deep brain stimulation and months of grueling physical therapy, she was able to walk — and even occasionally jog — in the run this December.

“Running is a wonderful way to get people out there and together,” Leslie Okun said.

The 3rd annual Season of Hope 5K/15K Run is scheduled for Dec. 8 in Gainesville and a Season of Hope run will also be held Nov. 3 in Charlotte, N.C., where Staab said they have family and supporters.

Okun said the new fellowship is important because there aren’t enough clinician-scientists trained in dystonia, Parkinson’s disease and movement disorders treatment and research. This is due, in large part, to a lack of federal funding for this type of training. But at the same time, as the population ages, these conditions become more common. 

“It’s an absolute necessity that we recognize that the next specialists need to receive this training to push the horizons to the next great discoveries and cure,” Okun said. “There is absolutely no way that can happen unless money goes in from efforts like this and foundations like Tyler’s Hope.”

Overall, Tyler’s Hope has committed more than $1.3 million in pledges and contributions to UF to support dystonia research at the Center for Movement Disorders and Neurorestoration.