SILVER SPRING, Md., April 30, 2019 /PRNewswire/ -- On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the seventh 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 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. The disease affects approximately 50,000 in the United States and 1 million worldwide.
"At least two children born each day in the United States will have TSC," shared Kari Luther Rosbeck, President and CEO of the TS Alliance. "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 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."
"While there currently is no cure, TSC is considered a 'linchpin' disorder, which means TSC research holds an incredible amount of promise for breakthroughs in treating other more common diseases like cancer, epilepsy and even autism," Rosbeck explained. "One such breakthrough advance is the first preventative clinical trial for epilepsy in the United States, with the goal to prevent seizures from developing in newborns with TSC and improving their cognitive outcomes."
Celebrating its 45th anniversary year throughout 2019, 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.
For more information, contact:
Jaye Isham, 301-562-9890 [email protected]
SOURCE Tuberous Sclerosis Alliance