First World Congress on Tourette Syndrome and Tic Disorders Presents Important Research Findings and Fosters Collaboration Among Scientific and Clinical Investigators From 38 Countries

The Tourette Association of America, in collaboration with its international partners, The European Society for the Study of Tourette Syndrome (ESSTS) and Tourettes Action UK, have released for public use key findings from the 1st World Congress on Tourette Syndrome and Tic Disorders, which was held in London, June 24 through 26, 2015. These discoveries will advance our knowledge and ability to treat these neurodevelopmental conditions, which affect 1 in 100 children as well as a significant number in of adults in the United States. 

More than 430 research scientists, physicians, neurosurgeons, psychologists, social workers and other experts from 38 countries and six continents gathered for the international meeting to present and discuss research in all areas, including drug development, genetics, comorbid conditions, surgical therapies and behavioral treatments for children and adults living with Tourette Syndrome and Tic Disorders. This unprecedented global assembly marked the first time a collective forum of such size and significance has ever been convened to explore means of improving the lives of people affected by these neurodevelopmental conditions.

Leading experts in the field made history as they laid the foundation for a new global workforce focused on Tourette and Tic Disorders research, presenting 185 scientific abstracts and 161 posters with important   discoveries and developments that have the potential to change our understanding of these conditions. A comprehensive library of research abstracts from the Congress is available at: www.eventmobi.com/tourette2015/.

“The 1st World Congress on Tourette Syndrome and Tic Disorders saw the largest gathering and networking of clinicians, scientists and other experts in the history of these conditions,” said Kevin McNaught, Ph.D., Executive Vice President, Research and Medical Programs, Tourette Association of America. “Notably, discoveries and development in most—if not all—areas of study were presented and discussed among researchers from the 38 countries represented at the Congress. We hope that this global collaboration and momentum will grow in the years ahead as we seek to increase understanding and develop effective treatments for Tourette and related conditions.”

Research topics ranged from investigations of the therapeutic use of cannabis to control Tourette and Tic Disorder symptoms, to analysis and new data exploring a variety of deep brain stimulation therapies, to new developments in Tourette Syndrome genetics and a host of other topics.

“The Congress allowed for a meaningful and dynamic discourse on novel treatments and therapies that will pave the way for ideas and strategies for years to come,” said Marc Scullin, M.A., Tourette Association of America, one of the Congress organizers.

Treatment options in the digital age were among the topics explored at the Congress, including those discussed by Dr. Douglas Woods, psychologist at Texas A&M University and co-chair of the Tourette Association of America Medical Advisory Board. Dr. Woods presented findings from clinical trials designed to improve existing Comprehensive Behavioral Intervention for Tics (CBIT) options through TicHelper, an innovative computer program that empowers children and adults to recognize and manage their tics.  

Other highlights include (For Full Library Click Here):

Dr. Mort Doran, who was anonymously profiled by Dr. Oliver Sacks in his book An Anthropologist on Mars, was a riveting keynote speaker, and the dance company Ballet Rambert performed Awakenings, in honor of Dr. Sacks’ best-selling novel of the same name.

John Walkup, M.D. Professor of Psychiatry, the Vice Chair of Psychiatry, and Director of the Division of Child and Adolescent Psychiatry, Weill Cornell Medical College and New York-Presbyterian Hospital, delivered the first Dr. Oliver Sacks Lecture, which was a state of the art presentation on current, and likely future, treatments for Tourette and related disorders.

Other presenters included Jess Thom, writer, artist and “part-time superhero,” who gave a voice to the individuals and families affected by Tourette as she spoke about her experience living with the disorder.

World Congress awards included the Dr. Oliver Sacks Award for Excellence in Tourette and Tic Disorders, presented to Jonathan W. Mink, M.D., PH.D., Vice Chair of the Department of Neurology at the University of Rochester Medical Center. The Professor Mary Robertson Award for Research Contribution was presented to Christos Ganos, M.D., from University College London Institute of Neurology.

Attendees also learned about upcoming research projects funded by the Tourette Association Research Grants and Fellowships Program. Since the Grants and Fellowships Program was formed in 1984, the Association has awarded over $21 million to 250 scientists working in basic scientific and clinical TS research. Projects funded have provided crucial insights into many areas of the disorder and encouraged investigators to become or to remain involved in pursuing Tourette research.

As a result of the World Congress, the Tourette community now has public access to the largest and most comprehensive compilation of TS research in the world, and is poised to move forward toward better clinical, psychological and cultural understanding of this commonly under-diagnosed neurodevelopmental disorder.

The first Global Advocacy Summit held on June 24, provided patient advocacy and support organizations from around the world an opportunity to discuss strategies for helping those affected by Tourette and Tic Disorders. The day-long workshop focused on quality-of-life issues including: the global impact, awareness and understanding of Tourette and Tic Disorders; supporting families; using technology creatively; advocating for children in schools and for adults in the workplace and society; and global support and collaborations.

About Tourette and Tic Disorders

Tourette is part of a spectrum of hereditary, childhood-onset, neurodevelopmental conditions referred to as Tic Disorders. These conditions affect both children and adults, causing them to make sudden, uncontrollable movements and/or sounds called tics (e.g. head bobbing, arm jerking, shoulder shrugging and grunting). Non-tic features, such as Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD) and learning difficulties, often develop in affected individuals.  Symptoms in Tic Disorders can range from mild to severe and, in some cases, can be self-injurious, debilitating and markedly reduce quality of life. While some treatments are available for people with Tourette and other Tic Disorders, approaches to care are inconsistent, medications are often ineffective and there is no cure. Recent studies show that up to 1 in 100 school-aged children in the U.S. have Tourette Syndrome or other Tic Disorders.

About the Tourette Association of America

Founded in 1972, the Tourette Association of America is dedicated to making life better for all individuals affected by Tourette and Tic Disorders. The only nationwide organization serving this community, the Association works to raise awareness, fund research and provide on-going support.  The Association directs a network of 32 Chapters and more than 80 support groups across the country.  For more information on Tourette and Tic Disorders, call 1-888-4-TOURET, visit www.tourette.org, on Facebook, Twitter, Instagram and YouTube.        

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