02 May, 2022, 08:00 ET
SILVER SPRING, Md., May 2, 2022 /PRNewswire/ -- On May 15, the TSC Alliance® will join tuberous sclerosis complex (TSC) organizations around the world to observe the 10th Annual TSC Global Awareness Day. On this day, thousands of individuals and families affected by TSC will come together to increase public awareness of the rare disease and share their stories of hope for the future. TSC Global Awareness Day is sponsored internationally by Tuberous Sclerosis Complex International (TSCi), a worldwide consortium of TSC organizations of which the TSC Alliance is a member.
The TSC Alliance will also celebrate the day by hosting its 20th Anniversary Step Forward to Cure TSC® Global Virtual Walk-Run-Ride on May 14 and 15. Interested participants may register online.
Tuberous sclerosis complex (TSC) is a rare genetic disease that affects people at all stages of life. TSC causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin, eyes and lungs. Changes in the brain caused by TSC have the biggest impact on quality of life, from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism. In fact, TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder.
Approximately 50,000 people in the United States and 1 million worldwide have TSC. Every individual's experience with TSC is different—many live independently while others require complex care. Along with its partners in TSCi, the TSC Alliance is working toward a future where every person and family affected by TSC has what they need to live their fullest lives.
"Everyone should know about TSC, especially healthcare providers," explained Kari Luther Rosbeck, TSC Alliance President & CEO. "Too many people go undiagnosed or misdiagnosed for years because of a lack of awareness. This is why TSC Global Awareness Day is an important event to help us inform the public at large about the disease, because we know early diagnoses change lives and early treatment—especially of seizures—may lessen the risk of developmental delays."
The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with TSC. It drives research, improves quality care, works to increase access and advocates for all affected by the disease.
For more information, visit tscalliance.org and tscglobalday.org.
Senior Vice President, Strategic Communications
[email protected] | (301) 562-9890
SOURCE TSC Alliance
Share this article