Family supports national effort

Rick Staab and his wife, Michelle, have three kids: Tyler is 12, Samantha is 9 and Luke is 5.

Two of them have dystonia, a chronic neurological disorder that can causes debilitating muscle spasms and tremors. It's likely their youngest child also inherited the gene that causes the disorder.

"It's very worrisome," Rick said. "Obviously, the likelihood is very strong. They say he has a 50-percent chance of having the gene. We'll test for the gene once he starts showing symptoms."

In July 2005, shortly after Tyler was diagnosed, the Gainesville, Fla. couple founded a national nonprofit in his honor to raise awareness about the disorder. Tyler's Hope for a Dystonia Cure has since helped fund national neurology research projects at Emory, Harvard, Colombia and other universities throughout the east and southeast.

With the help of family and friends, the four-year-old nonprofit has spread throughout Raleigh, Chapel Hill, Atlanta and Boston. It is in the process of expanding to Huntersville.

Leading the local expansion are the kids' aunt and uncle, Cheryl and Ken Staab, who have lived in the area for 22 years. They have served on the nonprofit's board of directors since it was established and helped spread the word through newsletters and special events.

Cheryl and Ken's daughter, Sara Staab, 23, helps with marketing and public relations through her Huntersville-based business Red Cape Communications.

"The cool thing about dystonia is that it is curable," Sara said. "Tyler's Hope is unique from any other nonprofit I've been involved with because little battles are being won every day and the end of the war is right around the corner."

Piggy-backing off successful fundraising ideas in other areas, the Huntersville branch plans to host multiple events throughout the year.

"We're looking to plan a golf tournament sometime this summer as well as a benefit concert later this year," Sara said. "We'll also host smaller events like 5-Ks, luau parties and wine tastings."

The discovery

Dystonia forces certain parts of the body into abnormal, sometimes painful, movements or postures. It can affect any part of the body, including the arms, legs, face and vocal cords. Symptoms usually arise between ages 7-13. The parents are carriers of the gene, but they don't have the disorder.

According to the Dystonia Medical Research Foundation's Web site, the disorder affects men, women and children of all ages and backgrounds, and at least 300,000 people in North America are affected.

The upside is doctors and researchers believe the disorder is curable, Rick said. The disorder also is strictly muscle-related, so his children's physical and mental growth are not affected.

The first time Rick noticed something was wrong with Tyler was in April 2005. Rick was teaching his 7-year-old the fundamentals of long-range basketball shots and kept telling Tyler to bring in his elbow.

Tyler was hesitant because every time he did it would shake.

Rick, his wife and their son's teacher would later discover that Tyler had hid his symptoms from them and even taught himself to write with his left hand.

"He was probably hiding it because he was scared, and he didn't know why he didn't have control," Rick said. "He was blocking it out and never said anything."

Tyler was officially diagnosed in July 2005.

Two years later, when Samantha was 7, she also started showing symptoms and eventually tested positive for the gene that causes the disorder.

Tyler can not always clearly speak, as the disorder affects his jaw and tongue, but he's able to communicate by typing on the computer and through cell phone texts.

"They know the difference," Rick said. "They were able to do everything before and now they can't, and that's got to be very frustrating. But Tyler is constantly smiling. He has a great attitude. Samantha's back and ankles are affected most. It's hard for her to sit up. Her muscles pull and twist her."

Current treatments do not bring about full remission, but both children have undergone deep brain stimulation, a common but risky procedure likened to putting a pacemaker on the brain. They also have used Botox injections to alleviate certain symptoms.

The Staab family remains hopeful because the nonprofit continues to raise funds for and entice top researchers. Tyler's Hope has helped fund a medical research book on dystonia, helped create an international patient registry and demographic map of people with the disorder and plans for a brain research center are underway at Shands Hospital at the University of Florida.

A memorial grant, which has helped fund three major drug and treatment research projects, also has been created in honor of the kids' late grandfather Dr. Edward Staab, who helped form the nonprofit. Its newest initiative is to raise $1 million dollars for a drug discovery project.

"We have the ear and the interest of these researches, so now it's about funding projects to find a cure," Rick said.