Tourette Association of America HQ

Awareness. Research. Support.

aka TAA   |   Bayside, NY   |  http://tourette.org

Mission

The Tourette Association is dedicated to making life better for all people affected by Tourette and Tic Disorders. • Raising public awareness and fostering social acceptance. • Working to advance scientific understanding, treatment options and care. • Educating professionals to better serve the needs of children, adults and families challenged by Tourette and Tic Disorders. • Advocating for public policies and services that promote positive school,work and social environments. • Providing help, hope and a supportive community across the nation. • Empowering our community to deal with the complexities of this spectrum of disorders.

Ruling year info

1982

President & Chief Executive Officer

Mrs. Amanda Talty

Main address

42-40 Bell Boulevard Suite 205

Bayside, NY 11361 USA

Show more contact info

Formerly known as

Tourette Syndrome of America

EIN

23-7191992

NTEE code info

Alliance/Advocacy Organizations (P01)

Alliance/Advocacy Organizations (P01)

Neurology, Neuroscience (G96)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Tourette Syndrome (TS) is a neurodevelopmental condition characterized by involuntary, repetitive movements and vocalizations known as tics. These tics typically emerge between the ages of 5-7 years, and tend to increase in frequency and severity between the ages of 8-12 years. For some, this tic severity continues to grow into adulthood.
Tics can range from mild to severe and, in some cases, can be self-injurious and debilitating. Additionally, TS commonly co-occurs with a number of other neurodevelopmental and neuropsychiatric conditions.
There is no cure for Tourette Syndrome. Treatment of TS is often complex, requiring multiple specialists. While we are making progress, the causes of Tourette and other Tic Disorders remain largely unknown and the disorder is often misunderstood by the public, medical community and the media.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research & Medical Program

The Tourette Association's Research Program includes our Centers of Excellence program, CBIT training for clinicians, numerous research consortia, and our Young Investigator small grants program.

For 45 years, the TAA has lead the way in supporting research and therapeutic development to meet the needs of those affected by Tourette and Tic Disorders. Since the onset of the research grants program, the TAA has awarded $21 million to 281 scientists to develop new understanding of and treatment for Tourette Syndrome. Of note, since 2003, every $1 of TAA research grant funding has helped investigators to obtain approximately $10 in grant funding for TS and related conditions from the National Institutes of Health (NIH).

As an example of the innovations to emerge from this program, the TAA both lead development of, and holds provider trainings for Cognitive Behavioral Intervention Therapy (CBIT), the first non-pharmaceutical treatment for Tourette. CBIT is now accepted world-wide as a first line intervention for TS.

The Tourette Association of America’s Centers of Excellence (CofE) program aims to improve the quality of life of people with Tourette syndrome and other Tic Disorders by promoting the highest level of care, research, education & training, and advocacy and awareness for these conditions. The program, which was developed in collaboration with leading medical and scientific experts in Tourette and related conditions, was launched in 2014 with the initial designation of nine CofEs located at premier medical and academic institutions across the US. Participating institutions include Johns Hopkins, Weill Cornell Medical College, UCLA, Yale Child Study Center, and University of Florida - Gainesville.

Population(s) Served
People with disabilities
Adults

The association and the CDC Medical Education partnership is part of a larger appropriation from the US Congress to promote expert medical education on Tourette Syndrome (TS). The goals of the medical education program are to provide expert education in TS to physicians and to allied professionals, and to encourage physicians application to the association's referral lists, in additional to dispersing the most medically sound information to guide interactions with individuals with TS for educators, medical professionals, and more.

Population(s) Served
People with disabilities
Families

The TAA advocates and lobbies on behalf of all people with Tourette and Tic Disorders.

Population(s) Served
People with disabilities
Adults

The TAA provides for education and awareness to the public on Tourette syndrome through, among other things, mailing of pamphlets, brochures, toolkits, videos and films as well as digital outreach via email and social media platforms, and our biennial National Education Conference.
For over a decade, the organization has also trained Youth Ambassadors to advocate on behalf of themselves and other children with Tourette, both in their school and community and on a national scale.
Examples of our educational material can be found in the resource center of website here, including new toolkits of families and for doctors: https://www.tourette.org/about-tourette/overview/living-tourette-syndrome/adults/

Population(s) Served
People with disabilities
Families

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of physicians the TAA has trained to practice Comprehensive Behavioral Intervention Therapy

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities

Related Program

Research & Medical Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Each year features between 1 and 5 total trainings as part of the TAA Behavioral Therapy Institute. CBIT is a behavioral treatment for tics and is recommended as first-line treatment by AAN.

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Families, People with disabilities

Related Program

Centers for Disease Control Partnership

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Numbers combine encounters at conferences and attendees of CBIT, medical, educational, and community/family seminars, and through Facebook LIVE events.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Since 1972, the Tourette Association of America (formerly the Tourette Syndrome Association) has pursued a vision of creating a better world for all people affected by Tourette and Tic Disorders.

- Raising public awareness and fostering social acceptance.
- Working to advance scientific understanding, treatment options and care.
- Educating professionals to better serve the needs of children, adults and families challenged by Tourette and Tic Disorders.
- Advocating for public policies and services that promote positive school, work and social environments.
- Providing help, hope and a supportive community across the nation.
- Empowering our community to deal with the complexities of this spectrum of disorders.
We offer resources and referrals to help people and their families cope with the problems that occur with TS. Our membership includes individuals, families, relatives, and medical and allied professionals working in the field.

The Tourette Association of America is comprised of approximately 32 chapters, 81 support groups, and 9 Centers of Excellence across the country. Each TAA chapter is charged with creating programs meant to aid in community education and support. For over a decade, the TAA has partnered with the CDC to produce educational materials, and facilitate programming to educators, schools, patients, and medical professionals. Our nine Centers of Excellence, in 16 of the nation's top medical and research institutions, promote the highest level of care, research, education & training, and advocacy and awareness for tic disorders.

Under the guidance of our Medical and Scientific Advisory Boards, the TAA provides seed funding to scientists researching causes of and treatments for Tourette; since the inception of the program the TAA has awarded over $21 million to 281 scientists. Additionally, since 2003 every $1 of TAA grant funding has helped investigators to obtain approximately $10 in grant funding from the National Institutes of Health (NIH).

Tourette.org is a tremendous resource for information on Tourette, with targeted information for families, children, teens and adults managing their diagnosis as well as contact information for providers and local chapters, and information on all medical and research programs including. The site has a rich resource library, including articles, pdfs, and videos that provide in-depth information about Tourette Syndrome and Tic Disorders. In addition to our website, the TAA has successful social media platforms to fight stigma, boost awareness, and advocate for the needs of the TS community.

The Tourette Association of America's Public Policy office advocates for policies that support the Tourette Syndrome and Tic Disorder community. A crucial part of our advocacy includes our network of chapters, members, and Youth Ambassadors who work with our office to communicate directly with their elected officials. This Youth Ambassador program identifies and trains children from across the country looking to advocate on behalf of themselves and all others with TS at their schools, local institutions, and nationally to increase understanding of this disorder.

The TAA was involved in the passage of the 21st Century Cures Act (2016), including the National Neurological Conditions Surveillance System, and the Children's Health Act (2000), which is the only government program funding work on Tourette Syndrome to educate parents and medical and education professionals and research prevalence of TS, demographics, and other key information. We continue to advocate in Washington to build relationships with like-minded organizations and push for legislation that will aid all people impacted by TS and Tic Disorders.

Our reach via social media continues to grow, seeing an increase to almost 10 million social media million views from 550 thousand in the last fiscal year; we will continue to find ways to expand awareness of the disorder even further across the country.

Our program with the CDC has delivered over 1,000 free educational opportunities (in person and online) to nearly 350,000 care providers, school personnel, families, individuals, and members of the general public. We are working to expand our assessment of impact for this program and engage more closely with Centers of Excellence and TAA chapters.

What is impressive about the TAA Research & Medical programs is not just the numbers of dollars invested, but also the number of advances made, which include:
Findings of gene, chromosomal loci and genetic variations that cause rare forms of TS, increase the risk of developing the disorder, and link TS with other conditions such as OCD.
- Facilitated the first FDA-approval of a drug for Tourette in over 30 years (Abilify[aripiprazole]).
- Showed that Deep Brain Stimulation (DBS) can effectively treat severe TS by stimulating specific areas in the brain and have developed and published guidelines for its use in clinical practice.
- Development of and clinical demonstration that Comprehensive Behavioral Intervention for Tics (CBIT), a medication-free behavioral therapy, is as effective as drugs in some individuals with TS.
- Launched a Centers of Excellence program, with 9 inaugural Centers at 16 of the nation's leading healthcare/academic institutions, to develop, implement, and maintain best practice guidelines to achieve the highest standard of care for people with Tourette and Tic Disorders.
- Hosted the 1st World Congress on Tourette Syndrome & Tic Disorders, which was the largest gathering of Tourette clinicians and scientists in the history of the disorder, with more than 430 attendees from 38 countries on 6 continents.
- Funding and supporting ongoing development of novel and promising treatment approaches, some of which already have obtained TS patent protection.
- Establishment of a wide range of resources (Research Grants and Projects Database, Brain Bank, Patient Recruitment Program, Gene Sample Collections), consortia (International Consortium on Genetics, Neuroimaging Consortium, International DBS Registry, Behavioral Science Consortium), and partnerships (eg. NIH, CDC)

Financials

Tourette Association of America
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Operations

The people, governance practices, and partners that make the organization tick.

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Tourette Association of America

Board of directors
as of 11/4/2021
SOURCE: Self-reported by organization
Board chair

Mrs. Randi Zemsky

Tourette Association of America

Term: 2018 - 2021

Fred Cook

Monte Redman

Astoria Bank

Alice Kane

Cindy Kurtz

Reid Ashinoff

Dentons US LLP

Stephen Barron

Barron Development LLC

Paul Devore

FMS Financial Partners, Inc.

Julie Moelis

Bruce Ochsman

Randi Zemsky

David Koch

Jeffrey Kramer

CBS

Peter Hollenbeck

Purdue University

Stephen McCall

Pushing to Greatness, LLC

Susan Courey

Touro College

Azad Anand

John Walkup, M.D.

Lurie Children's Hospital

Rovena Schirling

Former Broker NYSE

Jasmine Tarkoff

Temple Isaiah

David Schoenhaar

Ruskin Moscou Faltischek, PC

Cheri David

Clarkson David CPA

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 11/1/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

Equity strategies

Last updated: 02/01/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.