Tourette Syndrome Association committed to research, education

Contributed by:
Judit Ungar, MSW, President
Kevin St. P. McNaught, PhD, Vice President for Medical & Scientific Programs
Sue Levi-Pearl, Special Projects, Medical & Scientific Programs

Special to The Movement Disorder Society

October/November 2009

The TSA was founded in 1972 in Queens, New York, after a group of parents had gathered to support each other as they struggled to cope with the occurrence of a rare and previously unknown neurological movement disorder that was affecting their children. The Association has since grown dramatically and, three decades later, remains the only national, non-profit, member organization of its kind in the USA. Indeed, the TSA now has a presence throughout the country with an ever increasing number of chapters and support groups which now stand at 32 and over 150, respectively. Moreover, the organization is highly regarded internationally and is arguably the most notable supporter of Tourette Syndrome (TS) research and education in the world.

The TSA employs a full time professional staff of over 30 dedicated individuals working from its headquarters in Queens, NY, as well as from a staffed office for governmental affairs in Washington, D.C. The TSA is governed by a distinguished Board of Directors, and works closely with its Medical and Scientific Advisory Boards whose highly accomplished members guide the organization in carrying out its scientific grant award research program as well as providing sound advice concerning its medical and patient care policies.

TSA Services

The TSA's activities are funded by generous contributions from its members, philanthropic gifts, grants from agencies such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), and from various fund-raising activities that the Association organizes throughout the year. These monies are used for the development of literature and audio-visual materials that are distributed widely in an effort to educate medical professionals and lay people about TS; promote awareness of the disorder among the general population; provide support services to affected individuals and their families; advocate legislatively on behalf of all people affected by TS; and actively support meritorious medical and scientific research into the disorder.

Medical and Scientific Research

The TSA's research mission is to work with and support individuals, groups and institutions to determine the cause(s) and underlying pathogenesis of TS. With this new information, researchers will be in a better position to develop improved therapies for individuals affected by the disorder. Towards this end, the TSA collaborates extensively with its medical and scientific advisors. These internationally renowned clinicians and scientists volunteer their considerable expertise, time and resources to realize the noble objectives of the TSA. Their efforts have led to the development and implementation of a wide range of programs which include the following:

Research Grants and Fellowships. These awards fund clinical and scientific researchers conducting studies in all areas of TS, notably in the fields of genetics, neuropathology, neurochemistry, immunology, neuroimaging and animal model development. Importantly, these grants also help to fund drug trials and the development of behavioral therapies for individuals with TS.

Scientific Symposia. Typically, these international conferences are sponsored by the TSA every five years and are designed to bring together investigators from around the world to share and discuss new research findings in TS. These meetings also provide a forum for attendees to network and, ultimately, be a catalyst for fostering collaborations among researchers from diverse fields.

TSA Consortia. These are groups of leading experts who collaborate extensively on TS clinical and scientific research projects. To date, the TSA has organized and facilitated four consortia (Genetics, Behavioral, Neuroimaging and Clinical Trials) with a fifth now in the planning stages (Deep Brain Stimulation). These TSA sponsored collaborations have led to the groups' achieving several multi-million grant awards from the NIH.

TSA Brain Bank Program. By proactively educating its members about the value of registering their intent to donate their brain tissue to scientific research, the TSA has facilitated the collection of this rare resource to be used by the research community. In collaboration with the Harvard Brain Tissue Resource Center, both affected and matched control tissues are harvested at TSA's expense and then stored at the HBTRC. Currently, this material is available and provided to interested researchers who are studying the brain to discover alterations that might play a role in the development of the disorder.

Research Recruitment. TSA assists medical and scientific professionals in the recruitment of participants for those research studies that clearly have the potential to advance our understanding of TS, and may therefore lead to the development of more effective therapies.

Physician Referral List. The TSA maintains a database of doctors throughout the USA and abroad who have stated that they have expertise in diagnosing and treating people with TS. These listings are made available to individuals and caregivers who contact the TSA requesting physician referrals.

The future

The TSA arose from the recognition that such an organization could be instrumental in addressing the clear, present and future needs in TS. Over the years, the Association, along with its partners, supporters and funded researchers, has made significant progress in increasing awareness of and education about TS among the medical and general populations, and have played a significant role in shaping governmental policies that could have an impact on individuals with the disorder. Funding from the TSA has led to a better understanding of the disorder and has encouraged many investigators to become interested or remain in TS research. Indeed, support from this organization has led the way in the training of many early career researchers who have gone on to become leading experts in the TS field.

While the TSA is proud of its accomplishments over the past 37 years, we recognize that there remain many unmet needs. For example, there continues to be a great need for more effective and safe medicines for individuals with the disorder. The gene changes that cause the majority of cases of hereditary TS remain elusive, and it is not clear if or what environmental factors contribute to the development of the disorder. Finally, the neurophysiological alterations that underlie the various features of TS remain unknown. The TSA is now, more than ever, committed to achieving its goals. In the coming years, the organization will increase its efforts to unravel the mysteries of this baffling disorder.


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