Designating May 15 of each year as "Tuberous Sclerosis Complex Awareness Day" in New Jersey.

2024-2025 Regular Session Introduced by Dan Hutchison and 4 co-sponsors

Designates May 15 as New Jersey Tuberous Sclerosis Complex Awareness Day and seeks an annual Governor's proclamation to promote awareness and observance (no funding).

Substituted by SJR121

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Overview

AJR 181 designates May 15 of each year as “Tuberous Sclerosis Complex Awareness Day” in New Jersey. The measure aims to raise public awareness of tuberous sclerosis complex (TSC), a rare genetic condition that causes non-cancerous tumors in multiple organs and is associated with epilepsy, autism, and other neuropsychiatric conditions. The resolution requests the Governor to issue an annual proclamation and to encourage observation of the day with appropriate activities. The resolution takes effect immediately. AJR 181 has been substituted by SJR121 (its Senate companion), and the legislative action history shows substitution occurred in March 2025.

Purpose and Key Provisions

Designation: May 15 every year is designated as “Tuberous Sclerosis Complex Awareness Day” in New Jersey.

Proclamation: The Governor is respectfully requested to issue an annual proclamation recognizing May 15 as TSC Awareness Day and to urge public officials and residents to observe the day with suitable activities and programs.

Effective Date: The designation takes effect immediately.

Scope: Focused on raising awareness and recognizing the impact of TSC within the state.

Background and Context (from the bill’s accompanying statements)

Tuberous Sclerosis Complex is a rare genetic disorder causing benign tumors in organs such as the brain, heart, kidneys, eyes, and lungs.

It involves abnormalities in TSC1 or TSC2 genes, leading to tumor formation and disrupted brain development, which can cause epilepsy, autism, ADHD, anxiety, depressive symptoms, and mood-related issues.

TSC is a leading cause of epileptic seizures; about 60% of individuals with TSC experience autism.

Global prevalence is about 1 million people; in the United States, roughly 50,000 individuals are affected.

There is no cure currently; research emphasizes earlier diagnosis, therapies, and prevention strategies.

Organizations such as the TSC Alliance and international TSC associations support research, information sharing, and family assistance. The statement notes specific clinical networks and centers affiliated with TSC care in New Jersey.

Impact and Beneficiaries

Target Beneficiaries: Individuals and families affected by TSC, healthcare providers, researchers, and the general public in New Jersey.

Potential Impacts: Increased public awareness, enhanced community engagement, and potential support for neurodevelopmental research and clinical care networks in the state.

Procedural and Timeline Details

Introduced: June 6, 2024 (Assembly, Referred to Assembly Health Committee)

Committee Action: Assembly Health Committee reported favorably with the measure (December 16, 2024)

Status Update: Substituted by SJR121 on March 24, 2025 (companion measure in the Senate)

Legislative Path: As an Assembly joint resolution, it has been superseded by the Senate companion in the ongoing process.

Related Legislation

SJR 121 – Senate companion to AJR 181 (substitution completed; alignment of the two measures)

Notes:
- While the bill designates a day for awareness, it does not create new funding or programmatic mandates; it centers on recognition and observance through official proclamation and public engagement.

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