NEW JERSEY CENTER FOR TOURETTE SYNDROME AND ASSOCIATED DISORDERS

Education. Advocacy. Research.

aka NJCTS   |   Somerville, NJ   |  www.njcts.org

Mission

To ensure children and adults with Tourette Syndrome are empowered and accepted through education, advocacy and research.

Ruling year info

2008

Executive Director

Ms. Patricia V. Phillips

Main address

50 Division St Suite 205

Somerville, NJ 08876 USA

Show more contact info

EIN

26-1388409

NTEE code info

Alliance/Advocacy Organizations (P01)

Alliance/Advocacy Organizations (E01)

Alliance/Advocacy Organizations (H01)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2019.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Tourette Syndrome (TS) is an inheritable, childhood-onset neurobiological disorder characterized by tics—uncontrollable motor movements and vocalizations that are frequent and repetitive—that affects approximately 1 in 100 people, or 20,914 children under the age of 18 in New Jersey alone. Complications of the disorder include increased incidence of mental health disorders (79%), OCD (40%), ADHD (75%), as well as increased incidence of mood and anxiety disorders, social and emotional issues, and risk for substance abuse.

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?

NJCTS Tim Howard Leadership Academy

The NJCTS Tim Howard Leadership Academy is designed to develop self-leadership, advocacy skills, and resilience in teens with Tourette Syndrome (TS) and its associated disorders. The program increases the participants’ understanding of their disorders and provides opportunities and a safe environment to explore and identify their strengths, challenges, needs, and skills. The Academy provides an intentional space to build critical skills that will help young people with TS, like Tim Howard, to excel and, through that success, inspire others.

Population(s) Served
Adolescents

The NJCTS Youth Advocate Program trains young adults to lead presentations to students and community groups about Tourette Syndrome and associated disorders. Youth Advocates are 13- to 18-years-old and either have a diagnosis of TS or live with a sibling or family member with TS. These presentations reach thousands of youth in schools throughout New Jersey, are age-appropriate and tailored to fit the needs of the group, provide a strong anti-bullying message, and promote acceptance. NJCTS Youth Advocates have conducted more than 250 presentations, raising awareness and increasing sensitivity and understanding of this often-misunderstood disorder.

Population(s) Served
Adolescents
Students
Young adults

For more than a decade, NJCTS has developed and offered the Faculty In-Service Program, which is geared toward education professionals in elementary and secondary schools across New Jersey and provides information about Tourette Syndrome (TS) and associated disorders. These in-service presentations promote a more positive, inclusive, and successful classroom environment for students with these disorders, and are conducted by education or medical professionals. They can accommodate 25 people or more, run approximately 60-90 minutes, and are valuable to all faculty regardless of whether a student with TS is present in the classroom.

Population(s) Served
Adults
Adolescents
Children
Students
Teachers

NJCTS’ Wednesday Webinar series was launched in 2008 and today draws an audience from 48 states and more than 15 countries. The series has featured more than 75 online seminars for parents, educators and professionals on topics of interest to the TS and associated disorders community, such as anxiety, OCD, sensory issues, bullying, school accommodations, and much more.

Population(s) Served
Adults
Adolescents
Preteens
Family relationships

In collaboration with Rutgers University, NJCTS has a specialized TS therapeutic clinic at the Rutgers Graduate School of Applied and Professional Psychology. Doctoral candidates intern at the clinic treating both kids and adults with TS diagnosis. The program trains a new generation of professionals with interest and expertise in treating TS. The TS Clinic offers individual, family, and group therapy; cognitive-behavioral therapy; habit reversal therapy; social skills development sessions; referrals to physicians and testing services.

Population(s) Served
Students
Age groups
Families

NJCTS’ Physician Referral Network is comprised of more than 200 neurologists, psychiatrists, psychologists, counselors, and social workers with expertise in treating TS. Our referral is a direct link for families to medical professionals who treat TS, ADHD, OCD, anxiety, and depression.

Population(s) Served
Families

Families gather together for recreational fun, networking and learning opportunities in June.

Population(s) Served
Families
Families
Children
Parents

Scholarship are available to graduating high school seniors with a Tourette Syndrome diagnosis.

Population(s) Served
Students

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 research studies funded

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

Health, Adults, Children and youth

Related Program

NJCTS Tourette Syndrome Practicum and Clinic

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of support groups offered

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

Families

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of website pageviews

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

Age groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of training events conducted

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

Adolescents, Children

Related Program

Youth Development and Advocate Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of people on the organization's email list

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

Family relationships, Age groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

The New Jersey Center for Tourette Syndrome and Associated Disorders, Inc. provides non-medical support services for families across the state and serves as a valuable resource for education and medical professionals. The Center provides educational support services that are aligned with the initiatives of the current administration, including webinars for families and professionals; workshops at collegiate campuses around the state; professional conference presentations; advocacy services for families considering a 504 or IEP, or who require assistance with a new diagnosis in the school context; a youth advocacy program; and faculty and student in-service presentations, provided in-house to school faculty and students across the state, that offer extensive strategies and accommodations, and promote a message of tolerance and respect.

The Center has been a resource for families and professionals in the school context. NJCTS provides access to valuable resources and professionals; educational webinars for families and education professionals that focus on a range of topics, including what to expect from the process of special education classification, and social concerns for the child with TS and associated disorders; guest lectures and college workshops at campuses around the state on topics such as recognizing the early warning signs for these disorders, and an inclusive understanding of the diagnosis, treatment, and complications they present; professional conference presentations with a wide variety of education and medical-based professional organizations and associations around the state; consultations and advocacy for families considering a 504 or IEP, and families with a new diagnosis who seek counseling on what to expect in the school context; a Youth Advocacy program which trains young adults with disabilities to self-advocate, provide information, and promote a message of tolerance, acceptance, and sensitivity; and faculty and student in-services: in-house presentations delivered to education professionals and students in elementary and secondary schools across New Jersey that provide information about Tourette Syndrome and associated disorders while also promoting a message of tolerance and respect.

The Center currently provides support services around the entire state with some outreach into New York and Pennsylvania as well. However, while NJCTS has a wide reach, outreach to certain areas of the state needs improvement, particularly the southernmost parts of New Jersey. In order to remedy this, the Center needs more presenters available in this area and a more proactive presence and outreach. More funding would allow the Center to provide this outreach to those underserved areas and also train presenters who could serve there.

The New Jersey Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS) is the nation’s first Center of Excellence dedicated to educating the public, medical professionals and education professionals about Tourette Syndrome and its associated mental health conditions that provides non-medical support for families and individuals. Founded in 2004, the Center’s programs support the promotion and development of family services, support for children and professionals in schools, and diagnostic treatment therapies. NJCTS also leads the nation in supporting collaborative research into the cause and treatment of TS.

The New Jersey Center for Tourette Syndrome & Associated Disorders is a grassroots organization, staffed by 10 people, who provide support services for more than 3,000 families across the state. The Center’s level and quality of outreach and education about a chronically misunderstood cluster of disorders is unmatched by organizations with ten times the staff.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

NEW JERSEY CENTER FOR TOURETTE SYNDROME AND ASSOCIATED DISORDERS
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

NEW JERSEY CENTER FOR TOURETTE SYNDROME AND ASSOCIATED DISORDERS

Board of directors
as of 7/28/2021
SOURCE: Self-reported by organization
Board chair

Andrew D. Hendry

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 ? No
  • 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? Not applicable
  • 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 1/14/2021,

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

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data