12th Annual Tuberous Sclerosis Complex Global Awareness Day Scheduled for May 15

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May 01, 2024, 08:00 ET

SILVER SPRING, Md., May 1, 2024 /PRNewswire/ -- On May 15, the TSC Alliance^® will join tuberous sclerosis complex (TSC) organizations around the world to observe the 12th 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 entire month of May is also TSC Awareness Month in the United States, and the TSC Alliance will present a social media campaign called "31 Facts for 31 Days" to educate the general public about the disease.

"This year's TSC awareness activities are especially meaningful, because the TSC Alliance is also celebrating our 50^th anniversary," explained Kari Luther Rosbeck, TSC Alliance President & CEO. "Four moms started the organization back in 1974 to inspire hope, offer support and further research; those goals still guide us today."

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 and the leading symptomatic cause of 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 more 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 improves quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support. 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,
Chief Outreach Officer
TSC Alliance
[email protected] | (301) 562-9890

SOURCE TSC Alliance