The 13th Annual Tuberous Sclerosis Complex Global Awareness Day: A Call for Unity and Hope

13th Annual Tuberous Sclerosis Complex Global Awareness Day

On May 15, the TSC Alliance will unite with tuberous sclerosis complex (TSC) organizations globally to celebrate the 13th Annual Global Awareness Day. This important day aims to heighten public awareness regarding TSC and will see thousands of individuals and families affected by the condition come together to share personal narratives of hope and resilience.

TSC Global Awareness Day is backed by Tuberous Sclerosis Complex International (TSCi), a global coalition of TSC organizations that includes the TSC Alliance as a key member. Additionally, May is officially recognized as TSC Awareness Month throughout the United States, with the TSC Alliance promoting a social media initiative titled "31 Facts for 31 Days" to educate the public about this rare genetic disorder.

Kari Luther Rosbeck, President and CEO of TSC Alliance, highlights the significance of this day: "TSC Global Awareness Day presents an incredible opportunity for families affected by TSC to tell their stories and advocate for ongoing research to better comprehend this multifaceted disease. We're thankful for the dedication of our numerous researchers, clinicians, and industry partners who collaborate in our mission. Raising awareness is pivotal in enhancing the quality of life for those impacted by TSC."

Tuberous sclerosis complex is a rare genetic condition that can appear at any age and manifests through the growth of non-cancerous tumors in vital organs, such as the brain, heart, kidneys, skin, eyes, and lungs. The symptoms can severely interfere with function and quality of life, particularly involving the brain where manifestations like seizures, developmental delays, and various forms of intellectual and behavioral challenges can arise. Notably, TSC is identified as the leading genetic cause of epilepsy and a significant contributor to infantile spasms, along with a high correlation to autism spectrum disorder; it is estimated that 40-50% of those with TSC also have autism.

With approximately 50,000 individuals in the United States and around 1 million globally affected by TSC, experiences vary widely. Some people manage to live independently, while others may need comprehensive care and support. Collaborating with TSCi, the TSC Alliance strives for a future where every individual and family impacted by TSC receives necessary support to lead a fulfilling life.

About the TSC Alliance

The TSC Alliance is a recognized nonprofit dedicated to enhancing the quality of life for those affected by tuberous sclerosis complex. Their efforts center around catalyzing new treatments, advancing research towards a potential cure, and widening access to continual support. The Alliance engages in advocacy activities, quality care improvement, and increasing access for all affected by this complex disease.

For further information, you can visit tscalliance.org and tscglobalday.org.

For media inquiries, contact:
Dan Klein
Senior Director, Communications
TSC Alliance
Email: dan.klein@tscalliance.org
Phone: (301) 562-9890