Tuesday, February 23, 2010
Word gets around: Roanoke Co. lab addresses the science of stuttering
Not many people know about the little lab in North Roanoke County, but for stutterers from around the globe, it's a center of hope for a new life.

STEPHANIE KLEIN-DAVIS The Roanoke Times
The Hollins Communications Research Institute has developed an application for the iPhone, but hasn't yet worked through the legal issues with Apple.

STEPHANIE KLEIN-DAVIS The Roanoke Times
Joe Szulewski of Massachussetts works with LuAnn Yates last week at Hollins Communications Research Institute.
When news spread earlier this month that scientists had discovered mutations in three genes that appear to cause stuttering, the phones began ringing at a nonprofit in Roanoke County.
"They call on a regular basis," said Candy Smith. "But people wanted to make sure we'd heard."
Smith, a nurse, is one of two clinicians at Hollins Communications Research Institute, an internationally recognized leader in stuttering research and therapy located across from Walrond Park in Roanoke County.
The institute, which is most commonly called HCRI, was founded in 1972 by Ronald Webster, who at the time was a psychology professor at Hollins University. He remains a professor emeritus with the university, but devotes his time as director of HCRI.
"This is the first time a genetic linkage has been found," he said about the research, which was reported in the New England Journal of Medicine on Feb. 10. "For years we've known it tends to run in families. A little more than half [of people who stutter] can point to someone in their family background. ... Really this research is pretty much a breakthrough."
So, yes, the workers at HCRI had heard about the latest findings, and were celebrating.
"The more times that people can understand that science is really important in treating people who stutter, the better," said LuAnn Yates, a speech pathologist and the other HCRI clinician.
For Shannon Taylor of McKenny, who attended HCRI in 2003 and again in 2009, the research findings offered hope.
"There is an incorrect status or impression people have that folks who stutter are dumb, just that they cannot hold down a good job, and that is so far from the truth," said Taylor, 33. "To see that there is an actual connection there, just that you are not dumb, that there is a root cause that can be addressed at some point ... I guess that brings excitement, because once you have a cause then you have something to work toward for a cure."
Currently there isn't a cure for stuttering, which affects about 1 percent of the population. The research did point to a possible enzyme treatment for stuttering someday.
"While this study is the first to identify specific genes associated with stuttering, the findings apply to about 5 percent of the total cases studied," Dr. Jody Hershey, a member of the HCRI board of directors, said in an e-mail. "There is much more to be learned here; however, the door to further discoveries has been opened."
But for now, the focus at HCRI is on teaching skills and techniques to improve speech.
HCRI has developed an intense 12-day therapy course to teach people how to control their voice, respiration and facial muscles so they can speak without stuttering. It's not the only treatment available, but it is one that is widely known among people who stutter.
Nearly 5,800 people have gone through the HCRI treatment, traveling from 23 countries and all 50 states. HCRI has helped famous people such as TV journalist John Stossel and Annie Glenn, wife of astronaut and former U.S. Sen. John Glenn.
"People from all walks of life in all 50 states know exactly where Roanoke, Virginia, is because of what we do," Yates said. "And yet there are people down Plantation Road who don't know we are here."
Hershey, who is the health director of the New River Health District and a graduate of the HCRI therapy course, said the institute has had a major influence on stuttering research.
"I'm not sure that many people in the Roanoke Valley are aware of HCRI's national and international accomplishments and successes," he said.
Two weeks at HCRI cost $4,500 in therapy fees. Because of the economy, HCRI has used donations to lower the fee for the year to $3,700. Still, that doesn't include the costs of lodging, meals and entertainment.
Some people who enroll are able to get insurance to foot the bill. Others have attended on their employer's dime, chalking it up to job training. Additionally, departments of rehabilitation services in 39 states have agreed to pay the cost.
Besides treatment, the institute is also involved in research and developing technology as a tool for teaching clients and measuring speech. HCRI established the protocols for validating and diagnosing stutterers that were used in the journal study.
The reach of HCRI is growing as its technology has become more advanced.
The institute has developed a computer program that measures speech fluency. The program, FluencyNet, has been available to alums of the program for about five years, but will soon be available to people outside the program, said Kevin Lucas, the information technology specialist for HCRI.
The institute has also developed an application for the iPhone, but hasn't worked through the legal issues with Apple to share it with the world.
Webster said the institute's staff spend about 80 percent of their time focused on treatment, but devote the other 20 percent to research.
People who have attended HCRI say the experience changed their lives. But they have to keep practicing the skills they learned. Taylor, for instance, said she had to return a second time because she did not practice the skills enough after attending the first time.
Two alums have established ways to force themselves to practice their speech.
John Huff, 48, runs a public speaking forum at Children's Hospital of Philadelphia, where he supervises electrical maintenance.
"I knew I needed to keep constant practice," Huff said. "And some people are afraid of public speaking. So I set it up for anyone."
Huff said before coming to Roanoke he relied on written communication, and having others lead meetings he should have led. Now, he said, he gives presentations and is willing to tell his story to anyone.
Taylor also knew she had to practice, especially since she said she didn't after her 2003 trip to HCRI. So after her visit in 2009, she established a conference call that alums could call to practice their skills together.
She holds one-hour calls between four and 10 times a week, with people from all across the country joining.
"They have so changed my life and I will forever be grateful," Taylor said of HCRI.




