Last weekend we hosted a Treating Tourette Together (TTT) Summit in Minneapolis, Minnesota to discuss the next generation of behavioral therapy for Tourette Syndrome. It was an amazing experience surrounded by the best and brightest in Tourette Syndrome research and care. This event brought together close to 50 individuals with TS, healthcare providers, and researchers who worked collaboratively to develop an agenda for conducting the next generation of research on CBIT. If I had to summarize the experience, I think Ben Brown said it best, “To all Touretters reading this, please know that the Tourette science community truly cares and is shaping the research agenda to the actual needs of the community. Solid, solid people who raised a lot of questions I wasn’t even thinking about, myself. Lucky to have them.”
In addition to the TTT Summit, inquiries about the use of medical marijuana (cannabis) to alleviate the symptoms of Tourette Syndrome have been on the rise. In response to this, the TAA has released a position statement on this topic. To better understand the role of medical marijuana in treating Tourette Syndrome and Tic Disorders, the TAA formed a Cannabis Consortium comprised of leading clinicians and researchers in the field.
While there are many exciting research and medical advancements, we can’t forget it’s back to school season! Meeting new teachers, heading back to the classroom, and the fear of not being understood can be a lot to handle. We’re here to help. We have compiled some of the most useful tools and resources to support children, teens, parents, and educators to ensure a smooth start to the new school year. One of my personal favorites is the ‘Dear Teacher‘ video, a visual guide created for students to prepare a note for teachers about their Tourette Syndrome.
The year is flying by and before we know it the 2020 National Tourette Conference will be here. You can learn more about this event, take the opportunity to submit a proposal to present, and learn the many others happening across the nation by visiting tourette.org/events.
We can’t accomplish our mission without the help of our constituents. By making a donation, getting involved locally, or taking the Tourette Pledge, you can help further Tourette Syndrome awareness and make a difference.
Gratefully,
Finding Strengths in the Struggle
[Awareness]
While living with tics and other co-occurring conditions may be difficult at times, managing a chronic condition like Tourette Syndrome can also build persistence, grit, and determination. This is an exciting time of the year for many, from those going back to school to the changing of seasons. In this webinar, Dr. Phelps will discuss how to build realistic optimism, practice mindfulness, focus on interpersonal health, and take a problem solving orientation, all of which can help us get ready for a successful school year.
Position Statement on the Use of Medical Marijuana for Tourette Syndrome
[Research]
Inquiries about the use of medical marijuana (cannabis) to alleviate the symptoms of Tourette Syndrome have been on the rise. In response to this, the TAA has released a position statement on this topic. To better understand the role of medical marijuana in treating Tourette Syndrome and Tic Disorders, the TAA formed a Cannabis Consortium comprised of leading clinicians and researchers in the field.
Back to School
[Support]
Going back to school is an exciting time for students, parents and educators, but it can raise concerns for those with Tourette Syndrome and co-occurring conditions. To help the community prepare, the Tourette Association has gathered a plethora of resources to ensure a smooth start to the new year.
What’s the Budget?
[Public Policy]
Congress is out for August recess, however before they left, a budget deal was created allowing for deliberations on the proposed spending bills. This includes the $2 million for the Centers for Disease Control and Prevention’s Tourette Syndrome Program. This funding is imperative for the work that we do at the TAA on behalf of the community. We’ve received direct feedback from Senator’s offices that hearing from constituents has a major impact on their support, so get involved and encourage your friends and family to ask their local office for support for the Tourette Syndrome Program.
For more information on reaching out, you can contact your local TAA Chapter or Joe Grappone, TAA Chapter Manager, at [email protected].
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.
- 8/27/19: Free Webinar: Building Resilience with Tourette Syndrome – Dr. Kenneth W. Phelps
- 9/5/19: Free Webinar: Workplace Accommodations and Disability Rights
- 9/7/19: Peach Festival 5K To Benefit TAA of Greater NY State- Lewiston, New York
- 9/8/19 – 9/9/19: California Pizza Kitchen: Dine to Donate in Southern California
- 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
- 5/14/20 – 5/17/20: National Conference 2020 – Minneapolis, Minnesota
