Emily Shelby, a Sheboygan teen who has Tourette Syndrome (TS), has made it her mission to educate her peers and lobby representatives in DC and Wisconsin to raise funds and awareness to combat bullying and misconceptions surrounding TS.  Emily is part of the one in a hundred American children that exhibit symptoms of TS and other tic disorders. TS remains a mysterious, under diagnosed and misunderstood disorder in the public eye. Its frequent portrayal in television and movies as a disorder marked by emotional outbursts and uncontrollable vocal obscenities, has only served to alienate those living with TS and has stunted efforts to accurately define TS as a neurological disorder, not an emotional disability.

Last year, in an effort to combat these misconceptions, Emily became a part of the Tourette Syndrome Association’s (TSA) Youth Ambassador Program, an initiative that trains youth to speak about Tourette’s and advocate on The Hill for legislation that will help increase federal and state research dollars for TS and create education programs within schools and communities to help raise awareness for the disorder.  While in DC last March, Emily was able to meet with Congress members and lobby for increased funding for the Public Health Education and Research Program on Tourette Syndrome at the US Center for Disease Control and Prevention (CDC).

During her trip she also attended a meeting where she lobbied Wisconsin representatives for additional state funding. After returning from DC, Emily developed a presentation to share with schools to educate fellow students and teachers about TS.  She has given speeches at the University of Wisconsin as well as a number of local school districts throughout the state.

This May Emily will be bringing her advocacy efforts to the Green Bay area where she is organizing a 5k walk to raise funds for TS awareness along with the TSA Wisconsin chapter.

http://tsa-wisconsin.org/event/05-30-2015/4th-annual-tourette-syndrome-awareness-5k-event

The all ages family fun event takes place on May 30th at 10am in Voyaguer Park.  The event also includes a scavenger hunt, face painting, bouncy house, children’s raffle, among many other family-friendly activities.  For additional information and/or to register for the event please email: tsawarenesswi@gmail.com