I hope you all have been finding ways to stay cool. Even as the heat rises it won’t stop the TAA from providing resources, support and information across the nation.
As part of that effort, we recently hosted our Youth Ambassador training for the next group of teens, as well as the first Rising Leaders training for young adults. I am in awe of these two groups. Listening to their profound stories had a powerful and emotional impact on all in attendance and I am grateful to play a small role in their journey. All of us at the TAA are excited to see how they take the lead as the next generation of advocates for Tourette Syndrome.
We continue to produce informational and uplifting content to help raise understanding and reduce stigma. Recently released is our PSA: National News About Tourette Syndrome. This collaborative effort with the Centers for Disease Control and Prevention (CDC) is designed to spread awareness about the various free Tourette Syndrome resources available. This PSA features advocates from across the nation including John Bedell, Ed Buckner, Heather Ramsey, TAA Greater Carolinas Support Group Leader, and Eric McGowan, TAA Southern California Chapter Executive Director.
In addition, we hosted a Facebook Live on tips for navigating disclosure, which serves as a valuable resource for career and relationship development for individuals in the community.
While we work towards accomplishing our mission, we can’t do it without the help of our constituents. By making a donation, getting involved locally, or taking the Tourette Pledge, you can help further TS awareness efforts. No act is too small – collectively they are truly making a difference.
Gratefully,
Hosting a Facebook Fundraiser
[Awareness]
Have you wanted to give back to the Tourette Syndrome community? An easy, yet impactful way is to create a Facebook Fundraiser on behalf of the Tourette Association of America (TAA). Every dollar raised will go straight to the organization and elevates awareness among your personal networks. The TAA has created a step-by-step guide to get your started today!
Children with Tourette Syndrome in the US
[Research]
A new publication from the Centers for Disease Control and Prevention, analyzing parent-report data of 115 children from the 2014 National Survey of the Diagnosis and Treatment of ADHD and Tourette Syndrome, found that the time to diagnosis of TS averaged less than 2 years from when tics were initially noticed. In addition, almost 70% of parents reported that fatigue and major transitions made their child’s tics worse.
This study provides insight into the current experiences of children with TS and their families in the United States. The TAA has reviewed these new results and compared them to the TAA Impact Survey in a commentary publication also published this month.
A Call for Volunteers
[Support]
The Southern California Chapter recently expanded and is looking for volunteers! The chapter is seeking passionate and motivated individuals to lead support groups in San Diego County and to help start a new support group for North County members!
Not in SoCal, but want to help? Click here to learn more about volunteer opportunities across the nation.
What is Advocacy?
[Public Policy]
During our recent Youth Ambassador and Rising Leaders training in Orlando, Florida, we discussed the three basic types of advocacy: self, individual or systems advocacy.
According to the Merriam-Webster Dictionary, advocacy is defined as “the act or process of supporting a cause or proposal: the act or process of advocating something.”
Advocacy is not only lobbying your Members of Congress and Senators, though that is also an important part. Click below to learn more about various ways to advocate for TS in your community.
What’s Happening
[News & Events]
- Ongoing Clinical Trials: The TAA has a list of ongoing clinical trials that are looking for volunteers from the Tourette Syndrome community.
- 8/6/19: Free Webinar: Building and Maintaining Positive Partnerships with Your Child’s School
- 8/18/19: Annual Aiden Brasic Benefit for Tourette – Owosso, Michigan
- 10/6/19 – 10/7/19: CBIT Training – Glen Oaks, New York
- 11/3/19: Team Tourette TCS New York City Marathon – New York, New York
- 11/18/19: Annual Gala 2019 – New York, New York
- 1/8/20 – 1/12/20: Walt Disney World® Marathon Weekend presented by Cigna! – Lake Buena Vista, Florida
- Save the Date 5/14/20 – 5/17/20: National Conference 2020 – Minneapolis, Minnesota
