Congratulations to the Tuberous Sclerosis Alliance for another highly successful March on Capitol Hill. More than 80 advocates from across the nation took the time out of their busy schedules to meet with their Members of Congress. This year proved particularly challenging, as Congress continues to grapple with a budget stalemate and sequestration cuts. Despite the complexities of the budget situation, these dedicated individuals were able to clearly articulate the need to continue the federal investment in the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense.
Tuberous Sclerosis Complex (TSC) is a rare genetic disorder that affects approximately 50,000 Americans. It causes tumor growth in vital organs of the body, and can lead to serious complications such as autism and epilepsy. Many of the advocates who traveled to Washington cope on a daily basis with this disorder, either as patients or as parents with children diagnosed with TSC . The TSCRP is a competitive, peer-review research program that has awarded approximately $41 million in grants over the past 10 years for cutting edge research into TSC.
TSC advocates conducted hundreds of meetings this week with Congressional offices, including a meeting with Senate Majority Leader Harry Reid (picture above). One of the issues that many organizations are grappling with is whether they should continue to visit Washington, D.C. to advocate for programs they feel are important, especially given the tight budget and seeming lack of regular order in Congress. It remains essential, however, for advocates to remain engaged in the issues they care about to ensure that certain federal programs remain. Without the visits by organizations like the Tuberous Sclerosis Alliance, there would be missing voices from very important debates in our nation’s capitol. CRD Associates is proud to assist them with their government relations efforts, and we consider their staff and advocates a part of our extended family!
Senior Vice President