SILVER SPRING, Md. – On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the ninth 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 TS Alliance is a member.
The TS Alliance will also help celebrate the day by hosting the Step Forward to Cure TSC® Global Virtual Walk-Run-Ride on May 15 and 16. 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. Every individual’s experience with TSC is different—many live independently while others require complex care. Along with its partners in TSCi, the TS Alliance is working toward a future where every person and family affected by TSC has what they need to live their fullest lives.
“Too often, TSC goes undiagnosed. But we know at least two babies born each day in the United States will have it,” explained Kari Luther Rosbeck, TS Alliance President & CEO. “Nearly one million people worldwide are estimated to be living with TSC, with approximately 50,000 in the United States. TSC Global Awareness Day is a key event to help us inform the public at large about the disease, but more importantly we hope to reach those who may not be properly diagnosed yet.”
The TS Alliance is an internationally recognized nonprofit dedicated to finding a cure for TSC while improving the lives of those affected by funding and driving research; developing programs, support services and resource information; and implementing of public and professional education programs designed to heighten awareness of TSC.
For more information, visit tsalliance.org and tsclgobalday.org
SOURCE Tuberous Sclerosis Alliance
Leave a Reply