South Dayton teen advocates for Tourette awareness

Ezra Daly-Griffen, 12, is in San Antonio, Texas this weekend as a youth ambassador.

The Tourette Association of America announced this year’s Youth Ambassador Program inductees — a group of teens that have been selected to participate in the Association’s Ambassador training program in San Antonio, Texas, this weekend. These teens, both with and without Tourette Syndrome and related Tic Disorders, will share their personal stories and will be coached on how to raise funds and advocate for public policies and services that promote positive school, work and social environments for individuals affected by the disorder.

Among this spring’s chosen Youth Ambassadors, Ezra Daly-Griffen, 12, from South Dayton, who will complete a comprehensive training designed to equip Ambassadors with the tools they need to speak publicly about the often misunderstood disorder. Even though it’s estimated that one in 100 school-aged children in the United States has TS or a related Tic Disorder, the wide range of symptoms that include both motor and vocal tics can lead to bullying, isolation and life-long learning or emotional issues. After the training, Ezra will return to New York prepared to educate peers and local community on how to promote understanding and social acceptance of TS and its symptoms, by presenting to schools, clubs and community centers.

“Becoming a Youth Ambassador is important to me because I will be able to change other kids lives,” Ezra said. “I applied because I want to make a difference. One of the hardest things about Tourette Syndrome is that some teachers don’t understand parts of Tourette, such as Coprolalia and motor tics, like finger drumming on my desk. I hope to go into schools and teach teachers about more ways to handle Tourette Symptoms in their room.”

The Tourette Association’s Youth Ambassador Program, which empowers youth to improve public speaking skills while spreading awareness and acceptance for TS, is a crucial part of the Association’s mission. Many Youth Ambassadors leverage their training to meet with politicians, appear in the media and assist with fundraising and awareness raising campaigns throughout the year. The Tourette Association of America launched the Youth Ambassador program in April 2008, and continued it as an annual program due to the first year’s success. The program has grown to nearly 400 dedicated teens who have completed more than 1,000 activities including presentations, print and TV media interviews, and training other Youth Ambassadors to reach more than 5.5 million people through their combined efforts.

“The Association is proud to celebrate 10 years of bringing together and mentoring an ever-expanding network of teens, all committed to raising local and national awareness for the complexities of living with Tourette Syndrome and related Tic Disorders,” said Amanda Talty, President and CEO, Tourette Association of America. “Each of our Youth Ambassadors has a unique story to share that brings to light the need to advocate for change and to educate communities about ways they can support the TS community.”

Tourette Syndrome is part of a spectrum of hereditary, childhood-onset, neurodevelopmental conditions referred to as Tic Disorders. These conditions affect both children and adults, causing them to make sudden, uncontrollable movements and/or sounds called tics (e.g. head bobbing, arm jerking, shoulder shrugging and grunting). Non-tic features, such as obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD) and learning difficulties, often develop in affected individuals. Symptoms in Tic Disorders can range from mild to severe and, in some cases, can be self-injurious, debilitating and markedly reduce quality of life.

While some treatments are available for people with TS and other Tic Disorders, approaches to care are inconsistent, medications are often ineffective and there is no cure.

Founded in 1972, the TAA is dedicated to making life better for all individuals affected by Tourette and Tic Disorders. The premier nationwide organization serving this community, the Association works to raise awareness, advance research and provide on-going support. The TAA directs a network of more than 32 Chapters and support groups across the country. For more information on Tourette and Tic Disorders, call 1-888-4-TOURET, visit us at tourette.org and on Facebook, Twitter, Instagram and YouTube.

COMMENTS