March 8, 2023
We are excited to announce that we will have an in-person Advocacy Day this year! We hope that those who have only done our virtual Advocacy Day will come join us in person for the full experience in Washington, DC.
You will have the chance to meet with your Representative and Senators to help them better understand successes, trials, and tribulations of living with Tourette Syndrome (TS).
Congressional support will not only improve your life but also the lives of the other 1.4 million Americans living with Tourette Syndrome or another persistent Tic Disorder – and the 50% that have yet to receive a diagnosis.
Late registration ends on February 25, 2023, so register now!
Policy Priorities
- Continued funding of $2.5 million for the CDC Tourette Syndrome Program which consists of programming and research on public health education, the impact of co-occurring conditions, the work to increase the diagnosis rate and reduce diagnosis time, as well as funding of the Tourette Health Education Program, in partnership with the TAA, which educates doctors, medical professionals, educators, patients and the general public through webinars, support groups, workshops, educational materials and presentations.
- Continued investment in increased funding at the National Institutes of Health’s National Institute of Neurological Disorders and Stroke and the National Institute of Mental Health where Tourette Syndrome research is funded annually in areas including genetic constructs, neuroimaging, deep brain stimulation, brain circuits involved in TS, etc.
- Support to continue telehealth insurance coverage and availability during the Public Health Emergency (PHE) after the PHE status is removed. Due to a lack of specialists in TS, telehealth is beneficial because it reduces travel costs and time off of work and/or school. Additionally, TS and Tic Disorder patients sometimes do not exhibit their tic symptoms in the physician’s office. Telemedicine would enable TS patients to bring a device to a location where their tics are more representative of their daily experience. Tic severity can vary based on the environment including at home or in public places. This flexibility would give the provider the opportunity to see the tics of their patients and engage with the patient when the symptoms occur.
- Support policy to ensure people with TS can access the medications they need and get insurance coverage for them.
For questions, please contact Diana Felner, VP of Public Policy, at diana.felner@tourette.org or Olivia Woodrich, Policy Coordinator at olivia.woodrich@tourette.org
A Look Back at Previous National Advocacy Days
Youth Ambassadors and a Support Group Leader share their experiences from past Advocacy Day events and what it was like to #Rally4Tourette below.
Youth Ambassador,
Jordan F.
“Capitol Hill is the most special and unique event, and it’s the best place for advocating for Tourette Syndrome and Tic Disorders. You have the opportunity to share your story and have meaningful conversations with state senators and representatives.
In the past 3 years, I’ve achieved more than I ever thought I could. I convinced my senators to continue their donation to the Centers for Disease Control and Prevention (CDC) and continue to raise awareness for Tourette Syndrome. The meetings felt professional and felt like I was getting stuff done.
Going to Advocacy Day and being around other people with TS makes you feel that you fit in with other people who UNDERSTAND YOU! Parents should also donate their time, and maybe even their money, to achieving awareness across the GLOBE for Tourette Syndrome. You won’t regret it!”
Youth Ambassador,
Jacob R.
“Our family has traveled to Capitol Hill for Advocacy Day every year since 2013. I realized the impact I could create when my Congresswoman agreed to sign onto the Dear Colleague Letter after meeting with me.
She said our meeting educated her on Tourette and that my story compelled her to support our funding request, which allows us to provide resources and help for thousands of residents in North Carolina who have Tourette. Meeting with members of Congress and their staff helped me to learn various aspects of the legislative process and emphasized the importance of sharing my story.
Going to Capitol Hill puts the reality of our situation directly in front of those from whom we are asking for support. It is one thing to hear about the effects TS has and a whole other thing to see the effects up close. It puts a face to a statistic. Statistics can do a lot, but nothing is better than a person sharing their story.
I believe consistency in attending each year shows dedication to the cause and purpose. We are putting our money where our mouth is, so to speak, by attending Advocacy Day and are asking Congress to do the same by supporting our efforts.”
Carolinas Support Group Leader, Heather
“Last year, after seven years of advocating and meeting with Congressman Joe Wilson of South Carolina, he signed onto our Dear Colleague Letter! Not only was that exciting, but monumental in our efforts to retain the funding. Just as those with Tourette persevere every day, we must persevere in meeting with members of Congress.
The most important thing I did for my children was to support their desire to become Youth Ambassadors and to attend Advocacy Day on Capitol Hill. The training they received on public speaking, educating others about Tourette, and telling their story was invaluable and a skill they will use their entire life. The friendships and connections they made with others with Tourette was life-changing for both them and me.
Numbers count! The more people that attend individual meetings, the bigger the impact it has on members of Congress. It helps emphasize the need for support.
Tourette does not discriminate, and it’s not a political issue. We need bi-partisan support for funding.”
Youth Ambassador,
Jordan R.
“Last year, I was asked to co-present the TAA’s Public Policy Award to Representative David Price from my state of NC, and it made me feel empowered and like my efforts made a difference. It was exciting to meet a representative in person and take part in this with TAA CEO Amanda Talty, VP of Public Policy Diana Felner, and CDC Project Manager Natalie Joseph-Pauline, who all work hard to make a difference in the life of those with Tourette.
Every voice counts. Every act of support makes a difference. The representatives, senators, and their staff members listen to what we have to say, so it’s important we continue our efforts.
When 50% of those with Tourette go undiagnosed, that underscores the need for continued funding. I have an opportunity to play a role in our goal for funding and am fortunate I can contribute.”
