June 15 marked the end of another successful Tourette Syndrome Awareness Month. This is my third Awareness Month with the TAA and I am, yet again, amazed by the community’s engagement and willingness to further funding and understanding of Tourette Syndrome. This momentum is what will continue elevating this disorder among the general public and drive away stigma. We have all been privy to the cruel comments made by the media and people uneducated about Tourette Syndrome. In a response, we have launched the Tourette Pledge to create a social movement. While it gained momentum, we need more signatures in order to create a buzz and have an impact. Please take a moment to sign the pledge and make a donation to help us continue making progress.
In addition to our heightened awareness efforts, we are bolstering our National presence. I am pleased to announce that the TAA has invested in the first all funds budget model to expand on the presence of the TAA across the nation. This new model is being piloted with the Southern California Chapter, who recently appointed Executive Director, Eric McGowan, to oversee and expand operations and community engagement in the Southern California region. In tandem with this launch, Tracey Alexander, VP of Resource Development and Chapter Services, and I spent a week in California meeting with various investors and hosting Lunch and Learns. A particular highlight was hosting an information session for the staff at Facebook headquarters in the Bay Area.
To end awareness month on a strong note, TAA staff was present at many different locations throughout the US. The TAA New York Center of Excellence Consortia hosted a symposium at Weill Cornell in NYC to discuss TS and healthcare disparities, and I joined Dr. Barbara Coffey, and Tanya Sockol, of the TAA Florida Chapter, in Washington, D.C. to present at Mental Health America’s National Conference about the impact and management of Tourette Syndrome and co-occurring conditions. Two Youth Ambassadors, Jack Carlin and Alexandra Cuttler, went to great lengths in educating their local communities and Governor Cuomo about TS. As a result of their efforts a proclamation to light the Governor Mario M. Cuomo Bridge teal was issued. In addition, Nassau County Executive, Laura Curran, presented Amy Singh and members of Long Island Student Heroes a proclamation designating May 15 – June 15 Tourette Syndrome Awareness Month.
Awareness Month may have come to a close, but our efforts will not. Thank you to all who participated by sharing your story, making a donation, getting involved locally, or by making connections that can further awareness efforts. No act is too small – collectively they are truly making a difference.
Gratefully,
Tourette Syndrome: More Than a Punchline
[Awareness]
The Institute for Patient Access featured Amanda Talty, TAA President & CEO, in a recent blog to highlight the issue of access for TS patients. She discusses how the narrow view of TS has led to a one-size-fits-all treatment approach that doesn’t work for all patients.
“…insurers often require people with Tourette Syndrome to follow step therapy protocols, meaning the patient has to try – and fail – on an insurer-preferred medicine before being allowed to use what their doctor prescribed. This can be especially harmful for people with Tourette for multiple reasons.”
Clinical Research Training Scholarship in Tourette Syndrome
[Research]
Aimed at early career researchers, this scholarship is designed to recognize clinical studies related to Tourette Syndrome and Tic Disorders. This effort is led by the TAA and American Brain Foundation in collaboration with the American Academy of Neurology (AAN).
Application deadline: October 1
Highlight: Last year’s recipient Dr. Jennifer Vermilion studied anxiety and Tourette Syndrome.
Webinar Topics for Adults with Tourette Syndrome Survey
[Support]
While once thought that Tourette Syndrome was a childhood disorder, new research suggests that 66% of individuals with TS will experience symptoms throughout adulthood.
In an effort to better support the adult community, the TAA has created a list of resource topics that we are looking for input on. Click below to take the survey! Your feedback will help the Tourette Association of America develop resources of support.
Your Voice is Making a Difference
[Public Policy]
At the end of 2018, the Administration proposed changes to the protected class drugs for Medicare Part D. These protected class drugs ensure that once you are stable on a medication, your insurance plan could not change your prescription on your current plan or even subsequent plans.
We are pleased to report that the Administration recently released their Medicare Part D Final Rule and these changes were not included. This was supported by those who continue to advocate on behalf of the TS and Tic Disorder community. When we all work together to amplify priority policy issues, we can make a difference.
What’s Happening
[News & Events]
- 6/29/19: Santa Cruz County Marathon Ruck – Santa Cruz, California
- 7/12/19 – 7/13/19:Youth Ambassador & Rising Leaders Program – Orlando, Florida
- 7/13/19: Wisconsin Chapter Night at the Ball Park – Madison, Wisconsin
- 7/13/19: Discussing Disclosure July Facebook Live – Online
- 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
