11th Annual TSC Global Awareness Day Scheduled for May 15

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May 08, 2023, 08:00 ET

SILVER SPRING, Md., May 8, 2023 /PRNewswire/ -- On May 15, the TSC Alliance^® will join tuberous sclerosis complex (TSC) organizations around the world to observe the 11th 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.

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.

"One million people around the world are estimated to have TSC, with approximately 50,000 right here in this country," explained Kari Luther Rosbeck, President and CEO of the TSC Alliance. "Currently, there is no cure for TSC but ongoing research, such as the first-ever preventative clinical trial in the U.S. for epilepsy in TSC, may also provide promising breakthroughs in more common diseases such as autism, epilepsy and even cancer."

"At least two children born each day in the United States will have TSC," Rosbeck continued. "However, many cases go undiagnosed or misdiagnosed due to obscurity of the disease. Events such as TSC Global Awareness Day are critically important to educate people about TSC to ensure individuals with the disease receive proper medical care as well as to explain the importance of TSC research and how it relates to other more common diseases throughout the world."

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.

About the TSC Alliance

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.

MEDIA CONTACT
Jaye Isham,
Senior Vice President, Strategic Communications
TSC Alliance
[email protected] | (301) 562-9890

SOURCE TSC Alliance