Bill Text: NJ AJR181 | 2024-2025 | Regular Session | Introduced
Bill Title: Designating May 15 of each year as "Tuberous Sclerosis Complex Awareness Day" in New Jersey.
Spectrum: Partisan Bill (Democrat 3-0)
Status: (Introduced) 2024-06-06 - Introduced, Referred to Assembly Health Committee [AJR181 Detail]
Download: New_Jersey-2024-AJR181-Introduced.html
Sponsored by:
Assemblywoman LISA SWAIN
District 38 (Bergen)
SYNOPSIS
Designates May 15 of each year as "Tuberous Sclerosis Complex Awareness Day" in New Jersey.
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution designating May 15 of each year as "Tuberous Sclerosis Complex Awareness Day" in New Jersey.
Whereas, Tuberous Sclerosis is a rare genetic complex that affects multiple organ systems; and
Whereas, Tuberous Sclerosis leads to irregularities in one of two protein-encoding genes which regulate cell division and growth, causing benign tumors to develop in the brain, heart, kidneys, eyes, and lungs; and
Whereas, Triangular cortical tubers, or brain matter containing abnormal cells, appear in the fetus during pregnancy as characteristic of Tuberous Sclerosis; and
Whereas, The atypical brain structures associated with Tuberous Sclerosis block the flow of cerebrospinal fluid to the brain and result in epilepsy and developmental delays; and
Whereas, Nearly all individuals with Tuberous Sclerosis present with neuropsychiatric conditions, such as autism, attention deficit hyperactivity disorder, anxiety, depressive, impulsivity, and aggression; and
Whereas, Over half of individuals with Tuberous Sclerosis Complex are diagnosed with autism; and
Whereas, Tuberous Sclerosis Complex is a leading cause of epileptic seizures, specifically focal seizures, absence seizures, and myoclonic seizures; and
Whereas, Skin lesions, hypopigmentation, and facial discoloration caused by Tuberous Sclerosis develop across the lifespan; and
Whereas, Tuberous Sclerosis affects one million individuals around the world and 50,000 individuals in the United States; and
Whereas, Currently, there is no medical cure for the condition; and
Whereas, Organizations such as the TSC Alliance, Tuberous Sclerosis Complex International, and Tuberous Sclerosis Association convene to fund research, share information, and support families influenced by Tuberous Sclerosis; and
Whereas, May 15 is recognized as global Tuberous Sclerosis Complex Awareness Day, designed to increase public awareness for Tuberous Sclerosis; and
Whereas, It is fitting, proper, and in the public interest of this State to take action to increase recognition for this rare genetic condition; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. May 15 of each year is designated as "Tuberous Sclerosis Complex Awareness Day" in New Jersey.
2. The Governor is respectfully requested to annually issue a proclamation recognizing May 15 as "Tuberous Sclerosis Complex Awareness Day" in New Jersey, and to call upon public officials and citizens of this State to observe the day with appropriate activities and programs.
3. This joint resolution shall take effect immediately.
STATEMENT
This joint resolution designates May 15 of each year as "Tuberous Sclerosis Complex Awareness Day" in New Jersey. Tuberous Sclerosis is a rare genetic complex that affects multiple organ systems. Tuberous Sclerosis leads to irregularities in one of two protein-encoding genes which regulate cell division and growth (TSC1 or TSC2), causing non-cancerous tumors to develop in different organs, primarily the brain, heart, kidneys, eyes, and lungs.
The benign tumors and abnormal brain structures that are characteristic of Tuberous Sclerosis block the flow of cerebrospinal fluid to the brain and result in epilepsy, autism, attention deficit hyperactivity disorder, and various mood complexes. Tuberous Sclerosis is a leading cause of epileptic seizures. Sixty percent of those with Tuberous Sclerosis experience autism.
Tuberous Sclerosis affects one million individuals around the world and 50,000 individuals in the United States. At least two children born each day in the United States have Tuberous Sclerosis.
Currently, there is no medical cure for the condition. Strategic research will prioritize earlier diagnosis, therapies, and mechanisms for prevention. Organizations such as the TSC Alliance, Matthew's Friends, Tuberous Sclerosis Complex International, and Tuberous Sclerosis Association convene to fund such research and support families influenced by Tuberous Sclerosis. The Tuberous Sclerosis Alliance designates the Northeast Regional Epilepsy Group's Comprehensive Tuberous Sclerosis Clinic at Hackensack University Medical Center as a network clinic and referral center.
May 15 is recognized as global Tuberous Sclerosis Complex Awareness Day, designed to increase public awareness for this rare condition. By amplifying the voices of individuals in the Tuberous Sclerosis community, the State may benefit from innovative treatment strategies and improved patient outcomes.
