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.
As we look to address the need and dive deeper into new communities, we have added 13 new Support Groups across the nation, and responded to over 3,000 calls and emails looking for support.
The TAA continues to offer training sessions for medical and allied health professionals, educators and the general public. In 2019, 479 individuals received an introduction to CBIT training, or were trained in CBIT, the recommended first-line of treatment for Tourette Syndrome.
6,010 took advantage of family and community-based education programming and 1,718 education professionals attended our education presentations. 116 Youth Ambassadors, along with their team members, were trained as Tourette Syndrome advocates and 24 young adults were part of an inaugural class of Rising Leaders trained to be the next generation of advocates.
THIS WORK IS ONLY MADE POSSIBLE THROUGH DONATIONS.
50% of all people with TS and Tic Disorders are going undiagnosed. Your dollars allow us to reach more adults, teens and families who are lost in the face of a new diagnosis, or have yet to receive one. The evolution in TS understanding and social acceptance continues to change, but you remain an integral piece.
We remain invested in providing new and improved tools, but in order to do so, we need your unwavering support.
2019 YEAR IN REVIEW
TAA DIVERSITY COMMITTEE was established to ensure mission delivery reflects the diverse needs of the TS and Tic Disorder community. The goal is to sustainably address health disparities by particularly increasing diagnosis rates in rural, minority, and/or economically disadvantaged communities; increase education and awareness to more diverse audiences; and to discuss national diversity issues.
78 YOUTH AMBASSADORS + Adult Team Members were trained in Arlington, VA.
150 individuals attended NATIONAL ADVOCACY DAY on March 5, 2019 to advocate for the most pressing issues facing the Tourette Syndrome community.
The TAA ADULT TASK FORCE was launched to address the need for greater adult focused resources and support.
The Tourette Association of America hosted its annual RESEARCH AND MEDICAL MEETING, which included members of our Scientific Advisory Board, Medical Advisory Board and Centers of Excellence. The meeting brought together leading experts in research, clinical care, and treatments for TS, as well as TAA partners and collaborators from the government and pharmaceutical industry.
1,746 took the TOURETTE PLEDGE to shift public perception and increase tolerance for TS and Tic Disorders.
The American Academy of Neurology (AAN) released the first ever US GUIDELINES FOR TREATING TOURETTE SYNDROME AND TIC DISORDERS. This guide was authored in collaboration with members of the TS community and features Behavioral Therapy as the firstline treatment option.
TREATING TOURETTE TOGETHER (TTT) Summit was held in Minneapolis, Minnesota to discuss the next generation of behavioral therapy for Tourette Syndrome. Roughly 50 individuals with TS, healthcare providers, and researchers worked collaboratively to determine new research priorities to improve CBIT.
The TAA celebrated the continuation of a 16 YEAR PARTNERSHIP with the Centers for Disease Control and Prevention to deliver Tourette Syndrome health education programs nationally.
Six part ADULT WEBINAR SERIES launched in response to the need for adult support and resources.