named programs · 5 · from sources
What they call their work
Community Outreach
Offers free in-service training for school personnel in collaboration with the Long Island Tourette Association to improve understanding and support for students with TS.
Medical Outreach
Provides educational programs including lectures, workshops, and grand rounds for healthcare professionals on Tourette Syndrome and co-occurring conditions.
Research Collaboration
Engages in or supports clinical and scientific research to advance understanding and treatment of Tourette and tic disorders.
Support Groups
Hosts monthly support group meetings for individuals and families affected by Tourette Syndrome, held at the DeMatteis Center of St. Francis Hospital.
Youth Advocate Program
Trains youth aged 12–17 to deliver presentations about Tourette Syndrome in schools and community settings to promote awareness, reduce stigma, and foster self-advocacy.
activities · 5 groups
What they do
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Disease-Specific Clinical & Patient Education 2 activities
- Host and produce webinars and panel discussions on Tourette SyndromeOrganizes and presents webinars on topics such as explosive outbursts in Tourette Syndrome and family-school partnerships, in collaboration with organizations such as NJCTS and the NJ Chapter of the American Academy of Pediatrics. Also produces video resources featuring personal, parental, and medical perspectives on managing Tourette Syndrome.
- Provide educational resources on Tourette and associated disordersOffers a curated collection of educational materials including videos, articles, books, and external website links about Tourette and associated disorders for patients, families, schools, employers, and the community.
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Peer-Led Mental Health Support Groups 1 activity
- Host monthly support groups for children, teens, and parentsHosts monthly support groups on the first Friday of each month from 7:30 to 9:00 PM, with concurrent sessions for children, teens, and parents/adults. Includes an annual panel discussion in October as a substitute for the regular meeting.
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Medical Professional Education & Training 1 activity
- Provide educational programs for healthcare professionals and traineesOffers educational programs including didactics, workshops, lectures, conferences, one-on-one supervision, electives, staff training, and live patient panels for medical, psychology, nursing, and mental health trainees and professionals at undergraduate and postgraduate levels. Delivers Grand Rounds presentations to physicians and residents at local and regional hospitals to improve recognition of Tourette Syndrome and disseminate current treatment approaches.
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Training and Capacity Building for Trauma-Informed Student Support 1 activity
- Provide free in-service training for school personnelOffers free in-service training for school faculty, psychologists, social workers, and other personnel who interact with children with Tourette Syndrome, in collaboration with the Long Island Tourette Association.
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Uncategorized 3 activities
- Conduct or collaborate on clinical and scientific researchConducts and collaborates on scientific and clinical research studies to better understand Tourette Syndrome and tic disorders and to advance treatment development. Also contributes to the advancement of understanding in the field and provides prevalence data such as estimates of 300,000 children affected in the United States.
- Provide clinical services and treatment for Tourette and associated disordersProvides medication and non-medication treatments including Comprehensive Behavioral Intervention for Tics (CBIT), cognitive behavioral therapy (CBT), family therapy, speech therapy, occupational therapy, physical therapy, organizational skills training, and parenting skills training. Also offers referrals to medical resources and information about experimental treatments such as Deep Brain Stimulation (DBS) and clinical trials.
- Train youth advocates for peer and community educationTrains youth aged 12 to 17 to deliver outreach presentations on Tourette Syndrome and tic disorders in schools and community groups, promoting anti-bullying, acceptance, and self-advocacy. Youth advocates also co-present with medical faculty to healthcare professionals, providing personal perspectives on living with Tourette Syndrome.
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financials · form 990EZ · fy2025
revenue
Total revenue$22
Contributions & grants$00%
Program service revenue$00%
Investment income$22100%
Other revenue—
expenses
Total expenses$5K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out—
balance sheet
Total assets$215K
Cash—
Investments—
Liabilities—
Net assets$215K
5 years on record · 2021–2025 · YoY revenue -99.6%
leadership · form 990 part vii · fy2025
Who runs it
board members · 6
- Cathy Budman — Director & Trustee
- Dan Rabinowitz — Secretary & Trustee
- Jane Zwilling — co-director & trustee
- Kate Callan — Treasuer and Trustee
- Sana Shad — Trustee
- Stephanie Solow — Trustee
relationships · 19
Who they work with
- Adult Outpatient Psychiatry Department Partner — Partner department within Northwell Health providing adult outpatient psychiatry services
- DeMatteis Center Partner — Hosts training sessions for the Youth Advocate Program.
- Division of Developmental and Behavioral Pediatrics Partner — Partner division within Northwell Health offering developmental and behavioral pediatrics services
- Icahn Medical Center Partner — Collaborates as part of the New York State Consortium for Tourette to improve care and services for individuals with Tourette Syndrome.
- Institute for Neurology and Neurosurgery Partner — Partner institution within Northwell Health system offering neurology and neurosurgery services
- Long Island Tourette Association Partner — Collaborates with the Long Island Center for Tourette to provide free in-service training for school personnel.
- NJ Chapter of American Academy of Pediatrics Partner — Co-facilitated a webinar on explosive outbursts in Tourette Syndrome.
- NJCTS Partner — Co-facilitated a webinar on explosive outbursts in Tourette Syndrome.
- New York State Tourette Association Partner — Collaborates through its five chapters as part of the New York State Consortium for Tourette to improve healthcare, education, and quality of life for people with Tourette Syndrome.
- North Shore University Hospital Partner — Partner healthcare institution providing neurology and psychiatry services
- Northwell Health Partner — Partners with child psychiatrists from Northwell Health for clinical panel contributions.
- SUNY Downstate Medical Center Partner — Engages medical students from SUNY Downstate for youth-focused program involvement.
- Tourette Association Partner — Source of the DVD "Hot Topics in Evaluation, Treatment and Management of Tourette Syndrome and Co-occurring Conditions," from which educational content is shared.
- Tourette Association of America Partner — References and links to resources from the Tourette Association of America for CBIT, speech therapies, and deep brain stimulation.
- Tourette Association of America, Long Island Chapter Partner — Co-sponsors and lists support group events through its website.
- University of Rochester Medical Center Partner — Collaborates as part of the New York State Consortium for Tourette to improve care and services for individuals with Tourette Syndrome.
- Weil-Cornell Medical Center Partner — Collaborates as part of the New York State Consortium for Tourette to improve care and services for individuals with Tourette Syndrome.
- Zucker Hillside Hospital Partner — Partner hospital providing outpatient adult and child & adolescent psychiatry services
- Zucker School of Medicine Partner — Collaborates with faculty from Zucker School of Medicine for clinical expertise and panel participation.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Integrated Support and Research Modelmethodology: integrated support and researchBy combining direct service provision and medical referral with active promotion of research, the organization advances both immediate care and long-term clinical understanding of Tourette and associated disorders, creating a feedback loop between practice and science.
- Lived-Experience-Informed Education for Cliniciansmethodology: lived-experience_informed_educationBy using patient panels and direct education to expose healthcare providers to the lived reality of Tourette and associated disorders, the organization improves diagnostic accuracy and clinical empathy, leading to better patient outcomes.
- Multi-Setting Education and Supportmethodology: multi-setting support and educationBy delivering education and support across clinical, school, and community environments, the organization ensures consistent understanding and accommodation for individuals with Tourette Syndrome, reducing isolation and improving functional outcomes.
- Patient-Centered, Low-Risk Clinical Caremethodology: patient-centered careBy prioritizing individualized treatment plans that target the most disruptive symptoms and favor low-risk interventions first, the organization improves patient outcomes through a cautious, tailored approach that minimizes harm and builds trust.
- Youth-Led Peer Advocacy and Storytellingmethodology: youth-led storytellingBy empowering youth with Tourette Syndrome to share their personal stories and advocate among peers, the organization reduces stigma, fosters self-advocacy, and creates relatable narratives that enhance community and school understanding.