DESIGNATING MAY 15, 2025, AS “TUBEROUS SCLEROSIS COMPLEX AWARENESS DAY” IN DELAWARE.

Legislation Document

SPONSOR:

Sen. Hoffner & Rep. Ross Levin

Sens. Hocker, Huxtable, Mantzavinos, Sokola, Wilson

DELAWARE STATE SENATE

153rd GENERAL ASSEMBLY

SENATE CONCURRENT RESOLUTION NO. 86

DESIGNATING MAY 15, 2025, AS “TUBEROUS SCLEROSIS COMPLEX AWARENESS DAY” IN DELAWARE.

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, depression, 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 of the 153

rd

General Assembly of the State of Delaware, the House of Representatives concurring therein, that May 15

th

is designated as “Tuberous Sclerosis Complex Awareness Day” in Delaware.

SYNOPSIS

This resolution designates May 15, 2025, as “Tuberous Sclerosis Complex Awareness Day” in Delaware.

Author: Senator Hoffner