P A R T
BRAIN STORM 2
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n the hands of Okun and
neurosurgeon Kelly D.
Foote, MD, Tyler became
a pioneer as perhaps
the youngest person in the country in
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 (see story page 12). 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.”
I
The Staab family cheered on runners
Dec. 8, 2018, in Gainesville at the eighth
annual Season of Hope Run hosted by
Tyler's Hope for a Dystonia Cure and
the Norman Fixel Institute for
Neurological Diseases at UF Health.
Tyler is surrounded by his parents,
Rick and Michelle; his sister, Samantha;
and his brother, Luke.
PHOTO BY MICHELLE KOIDIN JAFFEE