teen Kristin Blencowe was selected to participate in the national Tourette Syndrome Association, Inc. fifth annual Tourette Syndrome Youth Ambassador Training Program in Washington D.C.
The program, for teens with Tourette Syndrome (TS) ages 13 to 17, prepares its ambassadors to educate their peers and younger children with accurate information by going into classrooms, schools and clubs to teach understanding, sensitivity and tolerance of TS and its symptoms. It further instructs how to dispel the myths and stereotypes that are often attributed to and associated with this widely misunderstood and misdiagnosed disorder.
Kristin was accompanied by her mother, Mary Blencowe, who also participated in the training.
“The training was excellent. I look forward to providing information about TS to teachers, students, Girl Scout troops, pediatricians, and other community groups so that they will better understand Tourette Syndrome and be able to support children with this disorder,” the 13-year-old said in a prepared statement.
Mary Blencowe, of La Cañada, pointed out that many kids with TS are bullied, because they have uncontrollable movements and vocal sounds. She said the media tends to focus on the coprolalia, which is the involuntary cursing, that affects 20 percent of the kids. The training is designed to promote tolerance and understanding of others with "differences."
First developed by a 12-year old with TS who is now a student at Duke University, the TS presentation leaves many with a positive impression, Blencowe said.
In addition to the training, the newly-trained Youth Ambassadors participated in a “Trip to the Hill” on April 19, during which they met with their local elected officials on Capitol Hill to inform them about how TS affects those living in their communities. A congressional luncheon briefing also took place that day, an event in which senators, congressmen and their aides heard first-hand about the struggles and issues faced from the youth ambassadors.
The Blencowes met with Aaron Baird, legislative aide to Congressman Adam Schiff, to explain some of the issues that the younger Blencowe and other TS students confront. The Blencowes, along with other California TS teens and their parents, also met with aides to Senators Dianne Feinstein and Barbara Boxer.
The TS Youth Ambassador program trains teens to advocate for themselves and for others and to educate their peers and younger children with accurate information. Youth ambassadors have found there are many personal benefits as well, such as learning to work as team members, and developing increased confidence in public speaking. Also, Youth Ambassadors learn skills that they will use for the rest of their lives and at the same time are helping to enlighten our generation about Tourette Syndrome.
Marked by involuntary vocal sounds and physical movements called tics, Tourette Syndrome is believed to be an inherited neurological condition frequently misunderstood and misdiagnosed, affecting about 1 in 100 children. Founded in 1972, the national Tourette Syndrome Association (TSA) is celebrating its 40th year as the only national, voluntary health organization for people with Tourette Syndrome.
The TSA has a three-pronged mission to identify the cause of, control the effects of, and to find a cure for Tourette Syndrome through education, research and service. The TSA directs a network of 33 Chapters and more than 150 support groups across the country. For more information about TS, call 1-888-4-TOURET or visit http://tsa-usa.org.