The Staab children from left are Tyler, 13; Luke, 6; Samantha, 10. Their parents, Rick and Michelle Staab started Tyler’s Hope for a Dystonia Cure Inc. five years ago after Tyler was diagnosed with the disorder. Subsequently Samantha was also diagnosed. Photo courtesy of Tyler’s Hope
As a healthy and active 7-year-old boy, Tyler Staab enjoyed playing outside. His favorite sports included basketball, soccer, tennis and golf.
In February 2005, while practicing his basketball skills with his father, Tyler could not bring his arm to his side without it shaking uncontrollably. It was the beginning of a long and challenging journey for the Staab family.
Tyler soon was diagnosed with DYT1 dystonia. A few years later, Tyler’s sister, Samantha, was also diagnosed with dystonia.
The disease causes prolonged, involuntary muscle contractions. In some instances, muscles that normally tighten and relax in harmony work against each other, causing the body to twist into abnormal, often painful postures. In most cases dystonia is inherited, but it may appear as a side effect of long-term drug treatment in Parkinson’s. Although the disease presents itself in the muscles, investigators believe it originates in a part of the brain called the basal ganglia, where messages that initiate muscle contractions are processed.
Scientists suspect neurotransmitters responsible for brain-muscle communication are being scrambled. But beyond that, little is known.
The Staab family is working with the UF College of Medicine to change that.
With the help of $1 million from Tyler’s Hope for a Dystonia Cure Inc., a leading scientist in the fight to end the disease that has disabled a half million Americans has joined the COM to lead the effort.
The gift, announced Feb. 21, will be used “100 percent for research,” said Rick Staab, president and founder of Tyler’s Hope.
Yuqing Li, PhD, has been recruited to the department of neurology to investigate causes and potential treatments for a malady that is not well known outside of the dystonia community — even though it is the third most common movement disorder behind Parkinson’s disease and tremor.
Li will team up with researchers at UF’s Center for Movement Disorders and Neurorestoration. For Tyler, now 13, the progressive disorder affects his ability to talk, walk and use his hands, and with Samantha, 10, it has targeted her limbs, neck and back.
In 2006, Tyler was one of the youngest dystonia patients in the country to undergo the DBS surgery. He’s had the procedure three times. Samantha underwent the surgery January 2010 to help make her life with dystonia easier, although progress has been slow.
“UF already has the best neurosurgeons and neurologists in the world working on this problem. The role of Tyler’s Hope is to bring a dream team together to cure a disease that has affected not only my children, but thousands of other kids,” said Staab.
When Tyler was diagnosed five years ago and subsequently when Samantha was diagnosed, “very few people, including physicians, knew that dystonia was not some breakaway Russian republic,” their father said. “Today, I believe dystonia’s days are numbered.”
