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Category: Public Policy

Happy New Year! Looking back on the last decade, we have made significant strides towards greater understanding, awareness and acceptance of Tourette Syndrome and co-occurring conditions. We continue to extend our footprint across the country with more national events including the Funders Breakfast in New York City, new webinars, increased provider education programming and an expanded Centers of Excellence program. 2020 is also monumental as it marks the return of our biennial National Conference.
On March 4, in Washington, D.C., the Tourette Association of America will advocate for the most pressing issues facing the TS community on National Advocacy Day. Youth Ambassadors, TAA staff, volunteers, and community members will head to Capitol Hill to speak with elected officials on policy affecting the community. Youth Ambassadors and a Support Group Leader share their experiences from past Advocacy Day events and what it was like to #Rally4Tourette.
From all of us at the Tourette Association of America, we wish you a joyous holiday season and a prosperous new year. 2019 was an impactful year, engaging the community with more training, education, events, and other awareness opportunities around the country. We hope to continue to shift public perception and inspire greater acceptance and inclusion for the TS community. This work is only made possible through your support.
The TAA understands the importance of telehealth services for communities across the country. In an effort to improve access and coverage to telehealth for Medicare recipients, the TAA has endorsed the Connect for Health Act. The bill removes barriers and improves telehealth coverage for Medicare through the Social Security Act.
To kick-off the season of giving, we hosted the 2019 annual Gala honoring David Begnaud, Lead National Correspondent for CBS This Morning, on November 18. The event raised more than $850,000 and featured empowering messages from David, TAA Youth Ambassadors Mia Mantei and Jordan Falkenstern, NYC Public Advocate Jumaane D. Williams, and an amazing performance by the Michael Wolff Trio. We all know the best deals are on Black Friday and Cyber Monday, but it's Giving Tuesday that's the most rewarding. For this international day of giving, we are calling on you to join the movement and support the TAA by making a donation, hosting a Facebook fundraiser, or by sharing our important messages throughout the day.
It is estimated that 1 MILLION Americans have Tourette Syndrome (TS) or a Tic Disorder. While that number may be staggering, our collective awareness efforts have increased understanding of the disorder, resulting in improved time to diagnosis. In a recent impact study led by the TAA, 71% of caregivers of children with TS reported receiving a diagnosis in less than 2 years, where most adults were diagnosed after 10+ years. HOWEVER, THE NEED FOR PROGRAMS AND SUPPORT RESOURCES CONTINUES TO GROW. Make a year-end gift and it will be doubled, thanks to the Ochsman Foundation.
In an effort to increase awareness, funds and research, the Tourette Association of America, in collaboration with the Congressional Tourette Syndrome Caucus, hosts Tourette Syndrome and Tic Disorder briefings on Capitol Hill. On October 16, the most recent briefing, Shining Light on Tourette Syndrome: Medical and Scientific Advances in Tourette Syndrome Research and Treatment, was held.
It's October, and while many of us are making plans to celebrate Halloween we cannot ignore some important causes the month sheds light upon. October is National Bullying Prevention Month, ADHD Awareness Month and OCD Awareness Week. Tourette Syndrome is an extremely layered and complex disorder and remains so vastly misunderstood among the general public. There is no one-size-fits-all approach, and because of this, the TAA partners with like-minded organizations that support our efforts. I encourage you to reflect on your journey with Tourette Syndrome and if you’ve been impacted by any of the above, please send us your personal story to help us join their efforts in elevating awareness for TS and co-occurring conditions.
The month of September is National Suicide Prevention Awareness Month. I am grateful for the continued public awareness and open discussions about this very serious topic. In a recent Impact Survey led by the TAA, an alarming 51% of adults and 32% of parents of children with TS reported to have considered suicide or participated in self-harming behaviors. In light of this, there are a number of helpful organizations (AFSP, NIMH, NAMI) and resources to support you and your loved ones, including Chapters and Support Groups across the country. Please know that if you need help, there is always someone to call. A Support Group Leader from the TAA Florida Chapter shared a personal story about how suicidal thoughts impacted her family that really hit home for me.
Capitol Hill Building
Congress has left for August recess, but they landed a budget deal that will allow for deliberations on their spending bills. This includes the $2 million for the CDC Tourette Syndrome Program. To encourage support for this program, the TAA will be providing the State Chapters and Support Groups email drafts that you can send to your local Senator's offices. Get involved, and encourage your friends and family to reach out to their Senators to have them support the CDC Tourette Syndrome Program.