Thursday Tyler’s Hope @ Dewey’s

Tyler's Hope Event Registration

A little bit about Tyler’s Hope:

The History of Tyler’s Hope for a Cure for Dystonia Foundation

As a healthy and active 7-year-old boy, Tyler enjoyed playing basketball, soccer, tennis and golf. Just like most active 7-year-old boys, Tyler enjoys sports and playing outside.

In February of 2005 all of this changed. While practicing his basketball skills with his father, we noticed that Tyler could not bring his arm in without it shaking uncontrollably. We decided to have this examined and this was the beginning of a long and disheartening journey. Tyler was in and out of Shands Teaching Hospital in Gainesville, Florida and many other nationally renowned hospitals. Tyler was examined by many specialists that performed numerous painful tests and treatments that resulted in dead ends and misdiagnosis. This was extremely frustrating to everyone but none more than Tyler.

During one of Tyler’s inpatient stays at Shands, we were introduced to Dr. Michael Okun. This meeting resulted in his examining of Tyler and rendering a diagnosis of Primary Generalized Early-Onset Dystonia. This was confirmed with a blood test for the Dyt1 Dystonia gene. Though we were all relieved to have a “diagnosis”, we were also very distraught with what we learned about this devastating disorder.

Dystonia is a neurological movement disorder affecting the central nervous system characterized by involuntary and often painful spasms of the muscles. This disorder currently has no cure and progressively robs one of the ability to control voluntary movements and even the ability to walk.

The earlier that a child shows symptoms of Dystonia, the more significant those symptoms become. Our son, Tyler, is now very disabled. Although Tyler grows physically and mentally normally, he is twisted, cannot eat or speak without extreme difficulty, cannot walk, read a book, or play with other kids like he used to. Tyler is remarkably good-natured and continues to have a positive attitude about his dystonia. A few years after Tyler’s diagnosis our daughter Samantha started showing symptoms and was diagnosed with generalized dystonia. Since Tyler and Samantha have the genetic form, there is a 50/50 chance that our youngest child will carry this gene and a 30% chance that he will become symptomatic of it.

It is our goal and the mission of Tyler’s Hope Foundation to raise awareness of this horrible disorder so no other child has to experience what Tyler went through to be diagnosed. Tyler’s Hope Foundation was established to advance research for a cure, discover effective treatments and to promote awareness and education of this devastating disorder. Please see “where the money goes” on the Tyler’s Hope website

If you are arriving for the symposium early come join FBS for a little fun breaking the ice for a good cause to help one of our own.

This is the second year we will have fun at Dewey’s Sports Bar. Last year this event was a huge success, playing golf in their state of the art sports simulators. Some of our attendees tuned up before the FBS golf tournament, others had a good time with their fellow FBS friends over good comfort food and drink, enjoying each other’s company and watching attendees play golf. This included some special conditions… what a hurricane? that’s right, Dewey’s simulators will do that. For 35 dollars you can reserve your place on the bus and spend a fun evening with us maybe even win some prizes… Play golf, football, baseball, soccer or basketball. FBS will donate proceeds to Tyler’s Hope. If if you can’t go, please consider donating at their website: http://www.tylershope.org/Home.aspx

A little more about Dewey’s…

No other bar in town is able to fit so many sports under the same roof, and with our state-of-the-art picture-real sports simulations you are able to get an adrenaline-filled experience that’s arguably better than the real thing. We combine all your favorite aspects of the sporting world – choice of game, a variety of settings, comprehensive analytics reports to help you hone your skill – with all your favorite aspects of a night out – excellent ambiance, delicious fare from our in-house grill, and happy hour specials that keep you coming back for more.

A few hours spent at our Orlando sports simulator offers the perfect indoor activities in Orlando – whether you’re looking for a way to unwind or get your practice in even on those rainy days. Adult sport enthusiasts enjoy polishing up their technique without the exorbitant cost of private lessons, and kids are able to try their hand at a variety of games while challenging their friends to see who the top performer is. We’ve found that sports simulators even offer the perfect place for that high stakes first date – enjoy a casual competition and let the conversation flow.

Tyler's Hope Event Registration