ON THANKSGIVING DAY 2009, 9-year-old Austin Streitmatter’s family was digging into turkey at their Tampa home when his right leg started shaking under the dining room table. “Mom,” he said, “I can’t make that stop.” Thus began a cascade of worsening involuntary muscle contractions that forced his body to remain upright for hours on end and his parents’ monthslong quest for answers and treatments — a quest that led to a diagnosis of a neurological disorder called DYT1 dystonia and, eventually, to an operating room two hours away at UF Health Shands Hospital.
lost the ability to sit or lay down,” says Austin, now 18 and one of about 500,000 people in the U.S. with dystonia. “That began the journey of probably the worst two years of my entire life. I was standing from when I woke up until I fell asleep from complete exhaustion in my dad’s arms and he laid me down.”
He didn’t know it early on, but Austin was following the same path as another boy just a few years older, Tyler Staab, who also had been diagnosed with the same genetic form of the disorder, which can cause twisting movements and often painful contortions and can interfere with the ability to walk, speak or even eat.
When Tyler’s symptoms first appeared at age 7, his parents, Rick and Michelle Staab, flew him to top medical centers far from their Gainesville home in search of a diagnosis before finally obtaining an accurate diagnosis from UF neurologist Michael S. Okun, MD ’96, who knew from the moment he saw Tyler what the boy had.
Okun recalls Rick Staab’s reaction: “I swear to God, now that I know what this is, we’re going to unleash fury,” Staab, his eyes wide, told Okun. “We’re going to figure out what this disease is. We’re going to cure it.”
The Staabs dove into a passionate pursuit to organize, donate and fundraise to support UF Health’s movement disorders program and recruit expert research scientists seeking a way to reverse DYT1 dystonia.
In the hands of Okun and neurosurgeon Kelly D. Foote, MD, Tyler became a pioneer as perhaps the youngest person in the country 2006 to undergo deep brain stimulation surgery, or DBS, which places leads in the brain that transmit electric pulses to control movement. “As devastating as it was, we were lucky in a way, to have Dr. Okun and Dr. Foote 5 miles down the road from us,” says Rick Staab, CEO of the health care technology management company InterMed. “If we talk about dystonia, everyone knows Dr. Okun and Dr. Foote.”
Foote, a professor of neurosurgery, and Okun, now chair of UF’s department of neurology, later performed DBS surgery on Austin as well, and as a result, he has reclaimed most of the abilities he had before the onset of dystonia. But while DBS has helped Tyler, now 22, regain the ability to eat without a feeding tube, he has needed two repeat surgeries, and many former abilities remain out of reach, including walking and speaking.
And when Tyler’s younger sister Samantha also was diagnosed with DYT1 dystonia and underwent DBS surgery, their parents doubled down on their vigorous pursuit for more effective treatments and their real goal: a cure. To the Staabs, their role is an essential part of a continuum of personal relationships toward the discovery of a cure — a continuum from donor to laboratory scientist to medical provider to patient.
“They partnered with me when we were at rock bottom personally,” Austin’s mom, Michele Streitmatter, says of the Staabs. “You can feel it emanating from Rick, this undying grit and determination — that it’s all achievable, it’s just a matter of time.”
Now, fresh hope is on the horizon: Three newly recruited, renowned neuroscientists and one distinguished physician-scientist from top U.S. and Canadian research institutions are moving their labs to UF Health, home to the new world-class Norman Fixel Institute for Neurological Diseases (read more about our new hires). Founded in January, the Fixel Institute is aimed at discovering new treatments and cures for vexing neurological conditions, including dystonia, Parkinson’s disease, Alzheimer’s disease, ALS, Lewy body dementia and concussions.
The institute and its new clinical care and research building — founded with generous support from the Lauren and Lee Fixel Family Foundation, Tyler’s Hope for a Dystonia Cure and others — will build upon the nation-leading “service and science hub” model created by Okun and Foote in 2011 at their former physical location on Hull Road in Gainesville under the name UF Health Center for Movement Disorders and Neurorestoration. At the new facility on Williston Road, Okun and Foote will carry on their philosophy: that the patient is the sun, and the care team — doctors, nurses, physical therapists, occupational therapists, speech and swallowing specialists, nutritionists, psychiatrists, neuropsychologists and social workers — orbit around the patient, all under one roof. The institute will also train fellows to encourage the next generation of passionate researchers.
In addition, the state-of-the-art facility encompasses three clinical trial rooms and five laboratories, inspiring hope for new clinical trials to come. For Rick Staab, the new institute is a physical representation of the continuum.
“We know,” he says, “the more money we raise, the more research we do, the faster we find a cure.”