On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the fourth annual TSC Global Awareness Day. On this day, thousands of individuals and families affected by TSC will join together to increase public awareness of the rare disease and share their stories of hope for the future.
This year's TSC Global Awareness Day will feature a social media campaign called #IAMTSC, which will offer people with TSC the opportunity to show that no two TSC stories are the same. People can view the campaign at www.TSCglobalday.org. In addition, the TS Alliance will present a Congressional Briefing on Capitol Hill starting at noon on May 15, featuring TSC parent Eric D'Amario and actor Jim O'Heir, best known as Jerry from the hit show Parks & Recreation. D'Amario conceived the #IAMTSC campaign theme, and O'Heir is a TS Alliance spokesperson.
TSC is a genetic disorder that causes tumors to form in vital organs, primarily in the brain, eyes, heart, kidneys, skin and lungs. It is also the leading genetic cause of both autism and epilepsy. TSC is as common as Lou Gehrig's disease or cystic fibrosis but is virtually unknown by the general population.
"One million people around the world are estimated to have TSC, with 50,000 or more right here in the United States," explained Kari Luther Rosbeck, President & CEO of the TS Alliance. "Currently, there is no cure for TSC but ongoing research continues to be promising, not only for this disorder, but also for those suffering from autism, epilepsy and even cancer, because of TSC's relation to the same genetic pathway."
"At least two children born each day in the United States will have TSC," Rosbeck continued. "However, many cases go undiagnosed due to obscurity of the disease, so events such as TSC Global Awareness Day are critically important to educate people about TSC as well as the importance of TSC research and how it relates to other more common diseases throughout the world."
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. Formed in 1974, the TS Alliance is dedicated to finding a cure for TSC, while improving the lives of those affected through the stimulation and sponsorship of research; development of programs, support services and resource information; and the development and implementation of public and professional education programs designed to heighten awareness of TSC.
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