Tyler’s Hope For a Dystonia Cure
by Matthew N. Skoufalos
Rick Staab believes that a disease that afflicts nearly half a million American children could be cured in 10 years.
In the past dozen years, Staab, the CEO-owner of Alachua, Fla.-based InterMed Inc., has become one of the foremost non-scientific experts on a movement disorder called dystonia. That’s because two of his children, Tyler, 16, and Samantha, 13, have battled the disease most of their lives.
Dystonia is a painful neurological disorder that affects muscular movement; those who suffer with the disease, like Tyler and Samantha, can be subject to painful muscle spasms, involuntary repetitive movements, and interrupted speech. The illness is caused by signal interference in the brain that has been traced to mutated forms of a protein called Torsin A. But short of therapeutic treatments, which include the surgical placement of electrodes in the brain, there is little that can be done to permanently reverse the condition.
And that’s what so frustrates Staab: although it is persistent, dystonia is a non-degenerative illness — meaning that if a cure were found to help correct the neurotransmitters in patients’ brains, they would literally be able to walk, talk, and play like healthy, normal children. It’s merely a question of raising enough awareness about the illness in the hopes of funding the research necessary to resolve it.
“For a disorder that’s non-degenerative, that’s larger than most commonly known disorders combined, in terms of the number of people it affects, there’s no money and no one’s ever heard of it,” Staab said. “We joke that it’s the largest movement disorder in the world that no one’s ever heard of.”
While other diseases like cancer, diabetes, and HIV/AIDS routinely receive billions of dollars worldwide in annual funding, Staab believes it would take only a fraction of that money to effectively eradicate dystonia within a decade.
“I believe $100 million will cure this disorder, which is nothing in comparison to the funds we’ve put into anything else,” Staab said. “We could easily solve this. We just need to get to that critical mass, that $100 million.”
“I think somebody out there could cut that check,” he said. “I think one person could do that.”
In the past dozen years, while waiting for that white knight to arrive, Staab has rolled up his sleeves and established Tyler’s Hope for a Dystonia Cure, a foundation entirely dedicated to dystonia research. The foundation applies 100 percent of every dollar it generates to funding dystonia research. All administrative overhead and operational costs are absorbed by Staab’s biomedical equipment and service business, InterMed.
None of the donations are used to pay for Tyler or Samantha’s medical bills, Staab said; in fact, his children can’t even participate in some of the clinical trials funded by Tyler’s Hope because to do so would present a conflict of interest. But ultimately, he said, the work that the foundation does “is going to help them along with everybody else.”
“I did start this selfishly because I want to cure my kids,” Staab said. But I can’t cure my kids without curing other ones. Half a million kids across the country are suffering from this too. If you can pay the researchers to do the research, then you can get that much closer.”
In the 12 years since the foundation was established, Staab said, it has helped raise awareness of dystonia as well as doing what it can to support more coordinated research efforts. Tyler’s Hope hosts an annual, global summit for dystonia research to help gather top scientists in the field for information-sharing. The foundation helped launch a national patient registry for dystonia patients that grants them access to opportunities to participate in studies. Its latest initiative, Staab said, is to capitalize on a few state-level proclamations to push for national awareness of the disease by making September a federal dystonia awareness month.
“Through more awareness and better diagnosis, there’s more researchers doing the research,” Staab said. “Now they’re doing clinical trials with research that’s been done in recent years in the hopes of there being a cure. The research in DBS was being done when Tyler was the youngest kid in America to have that surgery. Now it’s not experimental anymore.”
Although advances like those are promising, Staab said, “short of a cure, it’s not good enough.
“We know we can do this,” he said. “This is one of those disorders that is in the .0001 percent of the things that are out there in our world … that is curable. [If] we stop my son or my daughter from having dystonia, they go back to riding bikes or anything they could do before dystonia set in. Every year we do more research, we’re getting closer.”
“It’s purely a lack of funds,” Staab said.
In the meantime, he said, Tyler and Samantha aren’t hanging their heads. Both continue to earn high marks in school. Samantha has completed a 5K and plays on a traveling volleyball team. Youngest son, Luke, 9, who hasn’t shown any symptoms of the disease, “constantly is our best ambassador,” Staab said.
“They’re warriors,” Staab said. “They make it easier on us because they don’t complain. They never play the victim. They just are always smiling and doing well in school, and they have their struggles, but they work really hard at it.”
“I can safely say that they’re different from a lot of other people,” he said. “I feel blessed that they do act that way, because they do have struggles.”
The Hope Weekend is Tyler’s Hope for a Dystonia’s premier event. It will be held Augu. 15-16 at Gainesville Country Club, and is a weekend of golf, food, drinks, music and entertainment followed by an auction.
Established nine years ago, the Hope Weekend has continually grown and brought new and exciting things each year. All proceeds from the Hope Weekend go directly to research for a dystonia cure!
For more information visit tylershope.org.