The resolution designates May 15 of each year as Tuberous Sclerosis Complex Awareness Day in New Jersey. Tuberous Sclerosis is a rare genetic disorder that affects multiple organ systems, leading to the development of benign tumors primarily in the brain, heart, kidneys, eyes, and lungs due to irregularities in specific protein-encoding genes. This condition can result in significant neurological issues, including epilepsy, developmental delays, and neuropsychiatric conditions such as autism and ADHD. With approximately 50,000 individuals affected in the United States and no current medical cure, raising awareness is crucial for promoting research and support for those impacted by Tuberous Sclerosis.
The resolution calls upon the Governor to issue an annual proclamation recognizing this day and encourages public officials and citizens to engage in activities that promote awareness of Tuberous Sclerosis. By aligning with global efforts to increase recognition of this condition, the resolution aims to enhance understanding and support for individuals and families affected by Tuberous Sclerosis, ultimately fostering improved treatment strategies and patient outcomes.