On March 5, approximately 150 TAA Youth Ambassadors, parent/guardians, state chapter leaders and Advocacy Day attendees went to Capitol Hill to advocate for Tourette Syndrome. Attendees went to more than 120 meetings with Representatives and Senators from 24 states. Attendees requested support for public policy priorities of importance for the Tourette Syndrome and Tic Disorder Community: $2 million continued FY20 funding for the CDC Tourette Syndrome Program, Membership in the Congressional Tourette Syndrome Caucus, continued funding increase at NIH’s NIMH and NINDS, continued funding for the National Neurological Conditions Surveillance System at CDC, co-sponsorship of the CARE for TS Act (HR 1131), access to care and treatment including the protection of the protected class drugs and increased coverage for telehealth in Medicare, Medicaid and private insurance.
The Tourette Syndrome Congressional lunch briefing was held in coordination with the Congressional Tourette Syndrome Caucus and gave a glimpse into the life of people living with TS, the CDC Tourette Syndrome Program and its priorities. The speakers included TAA Youth Ambassadors Maren Carr and CJ Miller, Dr. Georgina Peacock, CDC NCBDDD and Olympic gold medalist swimmer, Anthony Ervin.
The TAA also held a meet and greet information session on March 4 at Capitol Hill in conjunction with the Congressional Tourette Syndrome Caucus where staff could come and meet attendees with Tourette Syndrome and TAA staff and Board of Directors members. Attendees included: Anthony Ervin, TAA Board of Directors Chair Randi Zemsky and Member Cheri David, and TAA Youth Ambassadors Jordan Ramsey, Jordan Patterson, Matthew David and Blaise Urato. The group answered questions and talked with Congressional staff about living with TS and Tic Disorders.
In addition, we presented the TAA 2019 Public Policy award to Rep. David Price (D-4-NC) for his leadership on neurological conditions, including Tourette Syndrome, and securing funding for the National Neurological Conditions Surveillance System at the CDC.
Thank you to all the attendees of Advocacy Day for making this event a success. Special thanks to our Congressional Tourette Syndrome Caucus Co-Chairs Rep. Steve Cohen (D-TN) and Peter King (R-NY) for their leadership and support for Tourette Syndrome. We would also like to thank the approximately 500 people who sent our take action letters to their Representative to request they support our public policy priorities. You letters have made a difference and have garnered new supporters for the CDC TS Program.
– Diana Felner
Vice President, Public Policy
Tourette Association of America