P A R T
BRAIN STORM 2
FAL L 2 0 1 9 | 5
UF Health patient Austin Streitmatter
is surrounded by members of the team
it takes to usher new treatments from
the lab to the bedside — from donors to
scientists to care providers. Behind him
from left: Donors Michelle and Rick Staab;
neuroscientist David Vaillancourt, PhD;
neuroscientist Yuqing Li, PhD; physical
therapist Meredith DeFranco; and
neurologist Aparna Wagle Shukla, MD.
I lost the ability to sit or lie down.
That began the journey of probably
the worst two years of my entire life."
— Austin Streitmatter, dystonia patient
O
PHOTO BY JESSE S. JONES
n 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.
“I lost the ability to sit or lie
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.