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Holliston Teen to Advocate on Capitol Hill for Increased Tourette Syndrome Awareness

by Press Release
April 29, 2017

Tourette Association of America Trains 37 Youth Ambassadors from Around the Nation to Change the Way the World Views a Misunderstood Disorder

Ellis at the capitol.

 Tourette Association of America announces that Ellis Wright, 16, from Holliston, MA, was part of a group of teens selected to participate in this year’s Youth Ambassador Program Training and 10th annual National Advocacy Day on Capitol Hill from March 6-7. These teens, both with and without Tourette Syndrome (TS) and related Tic Disorders, shared their personal stories with representatives in D.C. and have returned to their hometowns to raise funds and advocate for public policies and services that promote positive school, work and social environments for individuals affected by the disorder.

All the Youth Ambassadors (the signs say "I am proud to #Rally4Tourette")

Ellis completed a comprehensive training designed to equip Ambassadors with the tools they need to speak publicly about the often misunderstood disorder, and participated in 100-150 congressional meetings during the Association’s National Advocacy Day on March 7. Even though it’s estimated that 1 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 National Advocacy Day, Ellis returned to Massachusetts prepared to educate his 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.

“I became a Youth Ambassador to speak on behalf of my younger brother.  Once people understand what Tourette Syndrome is, they treat him much better and it helps him to not be embarrassed. On Capitol Hill, I found Senator Markey’s, Senator Warren’s and Representative Clark’s offices very receptive to learning about Tourette Syndrome and the need for education and funding.  Here in Massachusetts, I hope to educate as many people as possible about Tourette Syndrome.”

The youth ambassadors from Massachusetts (Ellis Wright, Grace Rooney, Allison Silver) outside Senator Markey's office.

National Advocacy Day is a crucial component of the Tourette Association’s Youth Ambassador Program, which empowers youth to improve public speaking skills while spreading awareness and acceptance for TS. Many Youth Ambassadors leverage their training to continue meeting with politicians, appear in the media and assist with fundraising and awareness raising campaigns throughout the year. The Tourette Association 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  380 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 ten 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 John Miller, President and CEO, Tourette Association.  “Each of our Youth Ambassadors has a unique story to share that brings to light the need for advocating for change and educating communities about ways they can support the TS community.”

Two youth ambassadors (Ellis Wright, Allison Silver) and their moms (Elizabeth Dembitzer, Rachel Silver) outside of Senator Warren's office:

About Tourette Syndrome and Tics

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.

About the Tourette Association of America

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 32 Chapters and support groups across the country.  For more information on Tourette and Tic Disorders, call 1-888-4-TOURET and visit us at tourette.org, and on Facebook, Twitter, Instagram and YouTube


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