Ellie (10) and Camryn (12)

Ellie (10) and Camryn (12) from Frisco, North Carolina have been selected as some of this year’s 64 Youth Ambassadors for the Tourette Association of America. They will share their personal story with representatives in Washington, D.C. during the Association’s National Advocacy Day on Capitol Hill on March 6 and will advocate for public policies and services for people affected by Tourette Syndrome and Tic Disorders.

Ellie was diagnosed with Tourette Syndrome in 2021 and her older sister Camryn has supported her every step of the way. Camryn is now spending her time advocating for her sister and others diagnosed with tic disorders, using her voice and passion to help others understand this commonly misunderstood neurological disorder.

An estimated 1 in 50 school-aged children in the United States has Tourette Syndrome (TS) or a persistent Tic Disorder, which causes them to make sudden uncontrollable movements and sounds called tics. TS is a lifelong condition affecting all races, ethnicities, and genders. Due to the complexities of the disorder, 50% of individuals are going undiagnosed. In addition, many children, parents, teachers, and even physicians don’t fully understand TS, which can lead to bullying, a lack of community support, an improper diagnosis, and a host of other issues that impair the quality of life for someone with TS.

Camryn and Ellie will complete comprehensive training and join a network of over 1,000 Youth Ambassadors and their adult team members to learn how to speak publicly about the often misunderstood disorder. In addition to the training, they will represent their state in the Association’s National Advocacy Day in Washington, D.C. where close to 150 congressional meetings will take place to raise awareness for the most pressing issues facing the community.

In addition, they help to educate their peers and local community on how to promote understanding and social acceptance of TS and its symptoms through presentations at schools, clubs, and community centers. “Youth Ambassadors for the TAA have a significant impact on awareness efforts in their local communities,” said Amanda Talty, President and CEO of the Tourette Association of America “Their efforts not only educate others about the disorder, but are a bridge to reaching other individuals who feel isolated to know they are not alone.”

Since the Youth Ambassador Program was launched in 2002; it has grown to consist of over 500 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.

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 ongoing support. The TAA directs a network of 32 Chapters and more than 80 support groups across the country and recognizes 20 Centers of Excellence. 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.

 

The post Frisco sisters heading to Capitol Hill together as Tourette Syndrome Tourette Association of America’s Youth Ambassadors appeared first on Island Free Press.

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