Washington, D.C., March 9, 2024 – More than 320 advocates from 39 states across the country gathered on Capitol Hill on March 6, 2024, to speak with their state representatives about Tourette Syndrome (TS) and other Tic Disorders for Tourette National Advocacy Day. This event occurs annually in March and is organized by the Tourette Association of America (TAA). A record-breaking number of children, young adults, and adults living with TS or another Tic Disorder joined this year, a 20% increase over last year’s attendance numbers.
The advocates asked their representatives to:
- Support $2.5 million in continued funding in LHHS-Appropriations for the Public Health Education and Research Program on Tourette Syndrome at the Centers for Disease Control and Prevention (CDC).
- Join the Bicameral & Bipartisan Congressional Tourette Syndrome Caucus.
- Support continued increases in FY25 funding for medical research at the National Institute of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS), and National Institute of Mental Health (NIMH).
- Co-sponsor the Safe Step Act (S. 652/H.R.2360) to improve step therapy protocols and ensure patients can safely and efficiently access the best treatment for them.
- Support the extension of telehealth coverage beyond May 11, 2024.
“Our community of 1.4 million Americans faces wait times of more than a year and a half to see specialists and 50% live without a diagnosis and its protections. Our community members know they must secure their representatives’ ongoing commitment to provide the funds necessary to ensure our programs and services continue expanding to meet their needs,” said Amanda Talty, President & CEO of the Tourette Association of America. “That’s why every year, more and more individuals come to the Capitol and meet with their representatives to advocate for our important policy priorities as well as enhanced funding for research and program enhancements.”
Among the March 6th advocates was hit recording artist and founder of the You Are Not Alone campaign, Meredith O’Connor. “Utilizing my platform for this advocacy has allowed me to see how impactful the strengths of those in the Neurodivergent communities can be. Seeing the way the representation has impacted those who have come to my meet and greets and concerts when touring has inspired me to work with organizations like the TAA as well as the NYC Department of Education to collaborate on mental health programming for this population,” said O’Connor. “These programs are pertinent to amplifying the self-efficacy, empowerment and representation needed to actualize individuals’ strengths. I am excited to have participated in the briefing on March 6th to discuss my work in expanding this advocacy in public education alongside initiatives with the NYC Department of Education.”
If individuals were not able to attend Tourette National Advocacy Day in D.C., they are encouraged to show their support from home by completing a Take Action Letter at tourette.org/TakeAction. Completing this form takes two minutes or less and sends a letter directly to representatives in support of the community of people across the nation living with TS and other Tic Disorders. These letters are key to gaining support at the national level and ensuring federal funding for TS research and public health education.
About the TAA
Founded in 1972, the TAA is the only national organization serving the TS and Tic Disorders community. The TAA works tirelessly to raise awareness, advance research, and provide ongoing support to individuals and families impacted by TS and Tic Disorders. The TAA directs a network of 31 chapters, 83 support groups, and recognizes 18 Centers of Excellence across the country. The TAA is a nonprofit 501(c)(3) organization. Learn more about Tourette Syndrome, Tic Disorders, and the TAA at tourette.org.
Caption: More than 320 individuals impacted by Tourette Syndrome or another Tic Disorder and their supporters converge on the Capitol to advocate for stronger support.
Caption: Tourette Association of America staff – Amanda Talty (Right), President and CEO, and James Saracini (Left), Vice President of Marketing and Communications – join with Meredith O’Connor (Center), hit recording artist and founder of the You Are Not Alone campaign, in advocating for support for the Tourette Syndrome and Tic Disorder community.
