Off the Clock: Rick Staab
7/1/2010 12:00:00 AM by: Lanier Norville Rick Staab, owner of Gainesville, Fla.-based InterMed Inc., uses his business
sense and industry connections to help grow his nonprofi t, Tyler’s
Hope for a Dystonia Cure. His oldest son, Tyler, and daughter, Samantha,
suffer from dystonia, a genetic movement disorder for which there is
little awareness and no known cure. Through Tyler’s Hope, Staab has made it his
mission to find one.
When 7-year-old Tyler Staab was diagnosed with dystonia, his parents
Rick and Michelle stayed up night after night, researching to
try to understand the cause, treatments, and potential cures of Tyler’s
painful, involuntary muscle contractions. Neither had heard
of the disorder before. They discovered, through research and a
series of hospital visits that included several misdiagnoses, that
there was a lack of knowledge in the area.
Then, a few years later, Tyler’s younger sister began to show signs
of the condition. “It completely changed our world,” Staab says.
The form of dystonia Tyler and Samantha suffer from, often
called generalized dystonia, can affect any muscle in the body,
including the legs, arms, torso, face, eyelids, and even vocal cords.
Symptoms occur when the brain sends signals to those muscles
that cause sustained spasms, forcing the affected body parts into
unnatural, often painful positions. According to the Dystonia Medical
Research Foundation, the disorder affects more than 300,000
people in North America and is the third-most-common movement
disorder, after Parkinson’s disease and tremor. One third of
those affected are children.
The lack of medical research and literature, along with unfamiliarity
with the disorder among the general population, spurred
Staab to create Tyler’s Hope, a nonprofi t that raises awareness
and money to help fi nd a cure. Other dystonia organizations
exist, but Tyler’s Hope is the only one that uses every penny
raised to fund research. Day-to-day operations of the organization
are completed by the Staab family and volunteers. “It’s all
Michelle and I can think about and do: How do we get more exposure
that brings in more funds that will allow for more research?”
Staab muses.
Tyler’s Hope has two annual
fl agship events: a charity golf
tournament and a dystonia research
summit, both run by the
Staabs. In addition, they support
projects such as publishing
relevant books, maintaining
the organization’s website,
frequently updating their blog,
and spreading the word in any
way possible.
“I don’t know how we do it,
other than we really don’t have
a choice,” Staab says. “I can’t sit
there for more than fi ve minutes
and not feel like I could be doing
something. It’s easy to forget
what others are going through,
but I look at it every day.”
BALANCING IT ALL
The organization has become interwoven with every aspect of
Staab’s life, including his job at InterMed. “At fi rst, I didn’t want to
mix the two up,” he says. But for Staab, being in the medical equipment
industry comes with major benefi ts. For instance, he says,
“If the University of Florida (UF) was looking around for a piece
of equipment that cost $200,000, then I could fi nd it for them for
half of that.” Less money spent on equipment leaves more room for
spending on other research needs.
“InterMed has defi nitely helped our cause,” Staab says. In addition
to helping fi nd connections with medical equipment suppliers,
InterMed employees and partner companies support the charity
through donations, volunteer work, and continued efforts to
spread the word. The Tyler’s Hope logo is printed on their business
cards and on stickers on all of the company cars. “Because of the
amount of time I spend on the foundation, I feel more obligated to
spend more time with my companies,” Staab says. “The faster I can
grow the company, the more impact I can have on fi nding a cure.”
Running a company and a nonprofi t might seem like enough to
fi ll one’s days, but Staab still makes time to be a dad. He helps Tyler
practice baseball, and he’s planning to accompany him on a team
trip to Cooperstown, N.Y., home to the Baseball Hall of Fame and
the Little League World Series.
He also enjoys helping Tyler, now 12, and Samantha, 8, with
their studies. Both are straight-A students. Staab’s youngest son,
“Spiderman” Luke, 5, loves to help his parents and older siblings
at the charity events. “I just like spending time with my kids, so I
make time,” Staab says.
TOWARD A CURE
Dystonia is not neurodegenerative, meaning it does not cause
damage to the brain over time like other movement disorders can.
Dystonia sufferers are only impaired because muscle contractions
interfere with the ability to physically engage the affected body
parts. Sufferers often have diffi culty writing, speaking, and walking.
Because of the nature of the disorder, there is tremendous
hope that it is curable. “If the symptoms can
be stopped, these kids can go back to living
normal lives,” Staab says.
For now, the only option is treatment
of the symptoms. Medication
and injections of botulinum
toxin can provide temporary
relief, while the invasive
procedure known as deep
brain stimulation (DBS)
can provide more extended
benefi ts. DBS
interrupts the signals
that the brain sends to
affected muscles, resulting
in fewer contractions
and greater
mobility. Tyler, once wheelchair-bound, has had two DBS treatments. He now plays right
fi eld for his championship-winning baseball team, The Mustangs.
In a recent blog post, the coach attributed the team’s success
to Tyler. “Tyler has taught the coaches and his teammates that regardless
of the circumstance we are facing, anything is possible for
this team to accomplish,” Tyler’s coach asserts. But as with Tyler’s
fi rst DBS treatment, symptoms may return, requiring adjustments
to his programming.
In an effort to fi nd a permanent solution, Tyler’s Hope recently
sponsored the Summit for Dystonia at UF’s McKnight Brain Institute
in Gainesville. Last May, leading movement disorder researchers
from all over the country came together for a roundtable
discussion to share the latest ideas and breakthroughs. Through a
special grant, Tyler’s Hope will fund research for the most innovative
approach presented.
Staab came up with the idea for the summit after he asked Dennis
Steindler, PhD, director of the McKnight Brain Institute, how
they would go about fi nding a cure if money were no object. Steindler
said solutions would arise from research groups structured
like the Manhattan Project. The best and brightest scientists that
specialized in the area had to be brought together in a think-tank
environment and left to brainstorm until they had the answer.
“Of course, we can’t really lock them up [as was rumored to
have occurred during the Manhattan Project],” Staab says. “But
this is a stepping-stone.” One of the biggest obstacles to research is
the expense of conducting it. But the money that Tyler’s Hope has
raised has attracted established scientists to the cause.
The organization’s latest goal is to raise $1
million to fund pharmaceutical research,
which now appears to be the most promising
approach to fi nding a cure. In
fact, Tyler’s Hope recently funded
$1 million toward a combined
research effort with
UF. Still, scientists are
drawn from a wide variety
of disciplines to
continue research.
For Rick Staab and
his family, every avenue
is worth exploring.
After all, he says,
“Every little thing
could make a huge
difference.”
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