I have bad news, faithful reader: This article is not about insurance. My apologies in advance; I assure you that I’ll be back next month with another thrilling tale from the white-hot world of risk management. But this month, we have more pressing matters to discuss. This month, I want to talk about the power of hope.
My wife and I had been friends with Rick and Michelle Staab for several years when their oldest son, Tyler, began having trouble controlling the muscles in one of his hands. Rick first noticed it when he was playing basketball with Tyler, who was 7 at the time. The Staabs took Tyler to several of the most wellknown medical facilities around the country, but it was Dr. Michael Okun at UF Health who ultimately made the diagnosis. When Rick told me about the meeting with Dr. Okun, it was the first time I’d ever heard the word “dystonia.”
In simple terms, dystonia is a neurological movement disorder that affects the central nervous system. Symptoms can include involuntary and often painful spasms of the muscles.
It is estimated that close to 500,000 people in North America have dystonia. In Tyler’s case, his condition got progressively worse as he grew older, impacting his ability to walk and talk. Like his parents, Tyler is fearless, and in the last decade, he has endured multiple multi-hour brain surgeries known as “deep brain stimulation” treatment. While these surgeries provided some relief from symptoms, that relief eventually dissipated each time. Tyler’s particular type of dystonia is known as DYT-1 Generalized Dystonia and is caused by a genetic mutation. Unfortunately, Tyler’s younger sister, Samantha, was diagnosed with the same disorder a few years after Tyler.
But, this is the good part. Rather than becoming depressed or withdrawn about their kids’ condition, the Staab family did something heroic: They decided instead to hope — and to fight.
Tyler’s Hope for a Dystonia Cure was founded in 2006, an amalgamation of the Staab family, friends and medical professionals. We held our first fundraiser that same year, a golf tournament that ten years later has exploded into a gigantic local success known simply as The Hope Weekend.
Since its inception, Tyler’s Hope has hosted multiple other events both locally and nationwide to raise awareness and funds to find a cure for dystonia, including the annual Summit on Dystonia Research that brings together some of the brightest minds in the dystonia research universe.
Further, through a partnership with UF Health, Tyler’s Hope created the first Center for Comprehensive Dystonia Care at UF’s Center for Movement Disorders and Neurorestoration, thereby creating a place where other families fighting dystonia can seek treatment. Because of the efforts of the Staabs and their Tyler’s Hope family of volunteers, Gainesville has become the epicenter for the fight against dystonia. One day, we hope it will be known as where dystonia was defeated.
That said, we’re only getting warmed up. The board has recently committed to a groundbreaking $2,000,000 Alignment Grant that will bring together top researchers from the University of Florida, University of Michigan and Duke University, enabling those top minds to collaborate and hopefully accelerate the timeline of finding a cure.
The medical professionals who have teamed with Tyler’s Hope assure us that finding a cure is a matter of time, but the only way of shortening the wait is to increase the funding for projects like the Alignment Grant. That is where we hope you can help.
Our 10th annual Hope Weekend will be held in Gainesville from August 6 – 8 at the Gainesville Country Club. By the time this article runs, the golf portion of the weekend may very well be sold out, but you can still help by volunteering your time, attending the pool party, donating an auction item, sponsoring a hole or simply making a donation to get us closer to a cure. Please contact me for more information at [email protected] or visit www.tylershope.org to donate.
Tyler will be a senior in high school next year. Samantha is going into the ninth grade. Their 10-year-old brother, Luke, is a star athlete and mercifully shows no signs of having dystonia. All are outstanding students and serve as role models with regard to handling adversity and pulling together as a family. Dystonia is not a degenerative condition, so when we find the cure, Tyler, Samantha and the hundreds of thousands of others in America fighting the same fight will be restored to their full physical capabilities. We at Tyler’s Hope aim to shorten their wait.
It is a matter of time. This is a fight we can win. We’re hoping you’ll join us.
Brian Scarborough is a Principal at Scarborough Insurance, an independent agency that sells all lines of insurance and has been serving the community since 1961. Visit scarins.com for more information.