SILVER SPRING, Md., May 1, 2016 /PRNewswire-USNewswire/ -- On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the fifth 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.
This year's TSC Global Awareness Day will feature a social media-based photo-sharing campaign called, "Where in the World is TSC?" Participants from around the world will be able to upload their photographs at www.TSCglobalday.org in an effort to demonstrate how widespread the disease truly is. In addition, in the United States, the TS Alliance will host its annual LIDS Step Forward to Cure TSC National Walk on the Mall in Washington, DC on May 15, and families all across the country have advocated for TSC Global Awareness Day proclamations in their hometowns.
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 and CEO of the Tuberous Sclerosis 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."
"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 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.
"Organizations around the world, like the TS Alliance here in the U.S., play a vital role in supporting anyone affected by TSC," said David Fitzmaurice, Chair of the TS Alliance Board of Directors. "They made a huge difference in the life of my young son when he was diagnosed with TSC and we had nowhere else to turn."
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SOURCE Tuberous Sclerosis Alliance