SILVER SPRING, Md., May 1, 2020 /PRNewswire/ -- On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the eighth 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. Because of the global COVID-19 crisis, the theme for this year's TSC Global Awareness Day is #Unite4TSC. 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.
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 approximately 50,000 right here in this country," explained Kari Luther Rosbeck, President and CEO of the TS 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 epilepsy, autism and even cancer."
"Even during the COVID-19 pandemic, at least two children born each day in the United States will have TSC," Rosbeck continued. "In addition, 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."
"Organizations around the world, like the TS Alliance here in the U.S., play a vital role in supporting individuals, children and families impacted by TSC," Rosbeck continued. "They make a huge difference by providing a place to turn; making connections with other families and individuals affected by TSC; sharing information and access to experts in clinical care; funding and driving research; and offering hope."
The TS Alliance is dedicated to finding a cure for TSC while improving the lives of those affected by funding and driving research; developing programs, support services and resource information; and implementing of public and professional education programs designed to heighten awareness of TSC.
VP, Communication Strategy
Tuberous Sclerosis Alliance
301-562-9890 | [email protected]
SOURCE Tuberous Sclerosis Alliance