Organizations and Families From Around the World Observe TSC Global Awareness Day
Julianne Moore, Actress
Dear PSA Director,
On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the second 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.
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. At least two children born each day in the United States will have TSC, but many cases will go undiagnosed due to obscurity of the disease. 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.
This year’s TSC Global Awareness Day will also highlight the recent release of newly updated TSC clinical diagnosis, surveillance and maintenance guidelines. These updated criteria will significantly impact early diagnosis, leading to better treatment and an improved quality of life for anyone affected by TSC. 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.
I invite you to help bring awareness to this years “Tuberous Sclerosis Complex Awareness Day” in May by placing this PSA in heavy rotation between now and Wednesday, May 15, 2013.
Thank you in advance for your support.
Sincerely,
Kari Luther Rosbeck
President and CEO, Tuberous Sclerosis Alliance
______________________________________
:30 PSA SCRIPT
HI, I’M JULIANNE MOORE. MAY 15 IS TUBEROUS SCLEROSIS COMPLEX GLOBAL AWARENESS DAY. IT’S A DAY WHEN PEOPLE FOCUS ON TSC, A DEVASTATING GENETIC DISEASE THAT AFFECTS ONE MILLION PEOPLE WORLDWIDE WITH COMPLICATIONS LIKE BRAIN AND HEART TUMORS, EPILEPSY, AUTISM, KIDNEY FAILURE, AND SOMETIMES EVEN DEATH. TODAY, ONGOING RESEARCH IS MAKING A REAL DIFFERENCE. BUT MUCH MORE WORK REMAINS. YOU CAN HELP. JOIN THE FIGHT AGAINST TSC TODAY AT T-S-ALLIANCE-DOT-ORG. THAT’S T-S-ALLIANCE-DOT-ORG. THANK YOU.