irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $950KRESEARCH & MEDICAL PROGRAMS - WORKING TO ADVANCE SCIENTIFICUNDERSTANDING, TREATMENT OPTIONS AND CARE OPTIONS FOR THE DISORDER BYPROVIDING FUNDING FOR RESEARCH INVESTIGATIONS IN THE AREAS OFNEUROSCIENCES, GENETICS, BEHAVIORIAL THERAPY, CLINICAL TRIALS.
- #2 $1.12MCENTERS FOR DISEASE CONTROL (CDC) PARTNERSHIP - THE ASSOCIATION ANDCDC WORK TOGETHER TO PROVIDE EXPERT EDUCATION ABOUT TOURETTE SYNDROMETO PHYSICIANS AND ALLIED PROFESSIONALS AND TO ENCOURAGE PHYSICIANS TOAPPLY TO THE ASSOCIATION'S REFERRAL LISTS. INCLUDES PROGRAMS TOEDUCATE SCHOOLS AND COMMUNITIES ABOUT TOURETTE SYNDROME.
named programs · 5 · from sources
What they call their work
Hispanic Outreach Campaign
Spanish-language public education initiative to raise awareness and reduce stigma in the Hispanic community
Impact Survey
Biennial survey assessing the lived experiences of people with TS, including mental health, discrimination, and access to care
Tourette National Advocacy Day
Annual event where hundreds of advocates gather at the U.S. Capitol to push for policy changes benefiting the TS community
Young Investigator Award
Provides up to $150,000 over two years to early-career researchers conducting innovative studies on Tourette Syndrome
Youth Ambassador Program
Trains young people with Tourette Syndrome to advocate on Capitol Hill and in their communities to reduce stigma and promote understanding
activities · 7 groups
What they do
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Autism and Neurodiversity Family Support Services 1 activity
- Direct support services for individuals and families affected by Tourette SyndromeProvides free educational resources, multilingual support groups (virtual and in-person), information and referral services, toolkits, and assistance with IEP meetings for patients, families, educators, law enforcement, and caregivers. Operates a Chapter and Support Group network in over 110 locations across the U.S.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding and advancement of Tourette Syndrome researchHas awarded over $22 million to fund more than 450 research projects across 16 countries. Supports research initiatives including the International Deep Brain Stimulation Registry, CBIT development, and provider training.
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Disease-Specific Clinical & Patient Education 1 activity
- Professional and public training programsDelivers in-person and online training to over 450,000 healthcare providers, school personnel, families, and members of the public on Tourette Syndrome and tic disorders.
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Healthcare Provider Directories and Clinical Support Services 1 activity
- Specialized clinical care access through Centers of Excellence and provider networksFacilitates access to specialized care via a national network of Tourette Syndrome Centers of Excellence and maintains a referral list of physicians and allied professionals trained in tic disorder management.
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Strategic Planning and Organizational Development 1 activity
- Strategic organizational developmentLaunched a 5-year strategic plan aligned with its 50th anniversary to enhance mission delivery and organizational effectiveness.
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Youth Leadership Development Programs 1 activity
- Youth Ambassador and peer education programsTrains and supports over 1,000 Youth Ambassadors to deliver educational presentations about tic disorders in schools and communities, and provides advocacy training for teens to educate peers and promote awareness.
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Uncategorized 3 activities
- Advocacy engagement and policy influenceConducts hundreds of annual congressional meetings, organizes national advocacy events (e.g., at the U.S. Capitol with over 350 participants), and enables public submission of Take Action Letters to promote federal funding and supportive legislation for Tourette Syndrome.
- Community-based research and impact assessmentConducts periodic Impact Surveys, including the 2022 and 2026 editions, to assess the mental health and lived experiences of children and individuals with Tourette Syndrome and tic disorders, based on responses from over 1,300 community members.
- National awareness campaigns and public educationLaunches large-scale awareness initiatives, including billboard campaigns in Times Square and Downtown Los Angeles, to increase public understanding of Tourette Syndrome.
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financials · form 990 · fy2024
revenue
Total revenue$5.24M
Contributions & grants$4.69M90%
Program service revenue$105K2%
Investment income$437K8%
Other revenue$0
expenses
Total expenses$5.80M
Program expenses76%
Admin / overhead11%
Fundraising13%
Salaries & benefits$3.21M
Grants paid out$673K
Largest expense lineCompensation
balance sheet
Total assets$9.50M
Cash$307K
Investments$7.06M
Liabilities$1.71M
Net assets$7.79M
Liquid reserves15.3 mo
4 years on record · 2020–2024 · YoY revenue +3.7%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 8
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| AMANDA TALTY | PRESIDENT & CEO | 40 | $310K |
| SONJA MASON-VIDAL | VP OF FINANCE & ADM. | 40 | $182K |
| KARON HARRISON - THRU 101624 | VP OF RESOURCE DEVELOPMENT & AFFILIATES SERVICES | 40 | $157K |
| JAMES SARACINI | VP, MARKETING & COMMUNICATIONS | 40 | $151K |
| KATRINA HERMETET | VP, MEDICAL & SCIENTIFIC AFFAIRS | 40 | $114K |
| JAMES NICHOLS | VP OF PUBLIC POLICY | 40 | $107K |
| SCOTT STERLING | VP OF RESOURCE DEVELOPMENT & AFFILIATE SERVICES | 40 | $70K |
| DIANA FELNER - THRU 12024 | VP OF PUBLIC POLICY | 40 | $11K |
board members · 17
- ALICE KANE — FOURTH VICE CHAIR
- ANTHONY ACAMPORA EFF 22425 — DIRECTOR
- BRUCE OCHSMAN — DIRECTOR
- CHERI DAVID CPA — DIRECTOR
- CINDY KURTZ — DIRECTOR
- DANIEL MCGARVEY — DIRECTOR
- DASH MIHOK EFF 22425 — DIRECTOR
- DAVID SCHOENHAAR — FIRST VICE CHAIR
- JASMINE TARKOFF — SECOND VICE CHAIR
- JEFFREY KRAMER — THIRD VICE CHAIR
- JOHN WALKUP MD — DIRECTOR
- KARL VALENTINI — DIRECTOR
- MARC BENSON — DIRECTOR
- MONTE REDMAN — DIRECTOR
- PAUL DEVORE — DIRECTOR
- RANDI ZEMSKY — DIRECTOR
- ROVENA SCHIRLING — DIRECTOR
relationships · 15
Who they work with
- Capitol Hill Government — Engages with legislators to advocate for federal support and policy change for people impacted by tics.
- Children's National Medical Center: Sheikh Zayed Campus for Advanced Children's Medicine Partner — Partner hospital providing pediatric care for individuals with Tourette syndrome.
- Education Advisory Board Partner — Provides educational expertise and guidance to the Tourette Association of America.
- Glendale Adventist Medical Center : Play to Learn Center Partner — Partner medical center offering specialized services for individuals with Tourette syndrome.
- Jacob Center for Evidence-Based Treatment Partner — Partner clinic providing evidence-based treatment for Tourette syndrome, including telehealth services.
- Medical Advisory Board Partner — Provides medical expertise and guidance to the Tourette Association of America.
- Movement Disorders & Neurorestoration Program Norman Fixel Institute for Neurological Diseases Partner — Partner program offering neurorestoration and movement disorder care for individuals with Tourette syndrome.
- New York Presbyterian Partner — Partner hospital providing clinical care for individuals with Tourette syndrome.
- Obsessive-Compulsive and Related Disorders Clinic, Department of Psychiatry and Behavioral Neuroscience, The University of Chicago Partner — Partner clinic offering specialized care for Tourette syndrome and related disorders.
- Rogers Behavioral Health-Chicago: The Anxiety Treatment Center of Greater Chicago Partner — Partner organization providing clinical care through the Tourette Association's provider network.
- Scientific Advisory Board Partner — Provides scientific expertise and guidance to the Tourette Association of America.
- Team Tourette Partner — Hosts and participates in events across the nation to support the Tourette Association of America's mission.
- University of Utah Behavioral Health Innovation and Dissemination Center (BHIDC) Partner — Partner center involved in behavioral health innovation and service delivery for Tourette syndrome.
- Wheaton Wellness Center Partner — Partner wellness center providing mental health and art therapy services for individuals with Tourette syndrome.
- Youth Ambassador program Partner — Youth-led initiative promoting awareness of Tourette Syndrome
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.
- Community-Led Empowerment and Peer Engagement 3 orgsmethodology: community_engagement_modelBy enabling affected individuals and families to lead education, advocacy, and peer support efforts, the organization increases engagement and sustainability, because lived experience fosters authenticity, trust, and resilience within the community.shared approach: Lived-Experience Leadership →
- Education as a Tool for Stigma Reduction and Social Acceptance 3 orgsmethodology: social_acceptance_through_educationBy using education, open dialogue, and social media campaigns, the organization reduces stigma and promotes social acceptance of Tourette Syndrome, because increased public understanding leads to more inclusive environments and reduced discrimination.shared approach: Lived-Experience Leadership →
- Integrated Support, Research, and Advocacy Model 3 orgsmethodology: integrated_support_and_researchBy combining direct support, research advancement, and advocacy, the organization improves outcomes for individuals with Tourette Syndrome, because addressing medical, social, and systemic needs together produces greater impact than isolated interventions.shared approach: Lived-Experience Leadership →
- Advancing Evidence-Based Clinical Practicemethodology: research_and_clinical_applicationBy promoting research and training clinicians in evidence-based treatments like CBIT, the organization improves access to effective care, because clinician capacity and treatment fidelity directly influence patient outcomes.
- Community-Led Advocacy and Education for Social Changemethodology: community-led_advocacyBy empowering individuals and families—especially youth—to lead education and advocacy efforts, the organization fosters social acceptance and policy change, because lived-experience leadership increases authenticity, engagement, and systemic impact.