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TouretteConnect: Highlights and Advances

Each day a child or adult is diagnosed with Tourette Syndrome (TS) or a Tic Disorder while countless others remain undiagnosed. Though the Tourette Association of America (TAA) continues to push forward with raising awareness, individuals and families still struggle to navigate this very misunderstood condition. But each passing day also brings new hope to the hundreds of thousands of individuals who live with Tourette Syndrome and Tic Disorders; hope that new advancements in research and treatment options will pave the way for a better life. There are unsung heroes in this scenario, the researchers and medical professionals who have dedicated their life’s work to studying, testing and unearthing discoveries that will incrementally make life better for our community. In particular, I would like to give sincere acknowledgement and thanks to Dr. Carol Mathews. In 2016, Dr. Mathews took on the monumental position of being the Co-Chair for TAA’s Scientific Advisory Board. In just a few short weeks she will be passing the torch to Dr. John Piacentini, Professor of Psychiatry and Biobehavioral Sciences in the David Geffen School of Medicine and Director of the Child OCD, Anxiety, and Tic Disorders Program at the Semel Institute for Neuroscience and Human Behavior at UCLA, a TAA Center of Excellence.

Dr. Mathews was once the recipient of the Young Investigator Award in the field of TS and has played an instrumental role in propelling research forward and personally taking part in massive discoveries that are historic for those with TS. “I am honored to have been involved with the TAA for my entire professional career. The TAA provides critical seed funding to encourage the best and the brightest researchers around the world to apply their expertise to Tourette Syndrome. Pilot funding from the TAA helped to launch my career in TS research. I originally began my psychiatric and research training with the intention of studying bipolar disorder, but serendipity and outstanding mentoring from TAA funded investigators led me to become involved in the world of TS, and I have never looked back. The work that I have done and continue to do on behalf of the TS community has been infinitely rewarding. Although I am stepping down as co-chair of the scientific advisory board, I will continue to be involved with the TAA and the TS community.” – Carol A. Mathews, M.D.

In addition to the research space, we welcome new Education Advisory Board members Mary Russell, Speech-Language Pathologist, and Patty Mendoza, Lead School Psychologist in the Kings Canyon Unified School District (KCUSD). Their expertise and involvement will bring a fresh perspective to the back-to-school season. The challenges of last year have had many positive outcomes, including greater mental health and disability services in place to help with the transition back-to-school this year. Our team at the TAA is here to provide additional resources and tips for this important transition. Please reach out if you are in need of support. At the minimum, here are some resources and tips that may help you start off on the right foot:

  • Download the TAA’s Educator Tool Kits to share with anyone working with your child or college administration.
  • Write a one-page email or a letter to all educators that highlights strengths, symptoms, and accommodations that work best. Watch the Dear Teacher video for ideas. Or, you can use this Fast Fact Sheet to inform any teachers, administrators or other school personnel.
  • Did you know: The TAA can help with educating school professionals! You can reach out or have the school reach out to programs@tourette.org. If you would like a Youth Ambassador to help with educating students, please reach out to the TAA at support@tourette.org.


As always, we are on your side. Listening and learning from each of you. Please continue to share feedback with us as it informs where we need to launch new and helpful supports. In the meantime, please take full advantage of the countless resources and tools to prepare you for the Fall, and learn about upcoming events to participate in that can help us move the needle for TS awareness.

Gratefully,

AmandaTaltySignature

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Raising Awareness in Underrepresented Groups
[Awareness]

Jerry Gidner, TAA Board Member and federal employee, chats with Brain and Life Magazine about his life journey which ultimately led to a Tourette Syndrome diagnosis at age 45.

As a Native American, Jerry’s focusing his time with the TAA to help increase recognition of the condition among the Native communities, as well as other historically excluded populations.

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Advances on the Scientific Front
[Research]

Dr. John Piacentini, director of the Center of Excellence UCLA Child OCD Anxiety and Tic Disorders Program (Psychiatry), is a very valuable and well-respected doctor in the field.

Because of his robust involvement with various neurodiverse conditions, we are thrilled to pass the torch of TAA Scientific Advisory Board Co-Chair from Dr. Carol Mathews to Dr. Piacentini, who will be joining Co-Chair Dr. Aryn Gittis. The TAA thanks Dr. Mathews, a leader in TS genetic research, for her many years of service!

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Workforce Development Program for Adults
[Support]

The TAA has launched its Neurodiverse Workforce Development Program to provide adults impacted by Tourette Syndrome, Tic Disorders, and related disabilities with tools needed to thrive in the workplace.

A resume building workshop, and a series of mock interviews, will help adults increase employability across many fields. 

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Support the CONNECT for Health Act
[Public Policy]

The TAA advocates for the most pressing issues facing the TS community. One of our Public Policy priorities includes supporting the CONNECT for Health Act which seeks to ensure that providers and beneficiaries can continue to provide and utilize, respectively, telehealth services in the Medicare program during and after the pandemic. 

Learn more about our key public policy priorities, get guidance on speaking with Congressional leaders, and send an action letter asking for support of the CONNECT for Health Act and other policies.