From March 1-3, 2016 TS Alliance Community Alliance leaders, Board of Directors members, staff and other supporters converged in Washington, DC for our annual March on Capitol Hill, a Congressional Briefing as well as the Spring 2016 Board of Directors meetings, Community Alliance Leadership Training, and the much-anticipated Volunteer Recognition Dinner, when the 2015 Volunteers and Community Alliance of the Year were announced.
The week kicked off Tuesday night with the March on Capitol Hill Advocacy Training Dinner, where participants prepared to meet with their State Representatives and Senators the next day.
On Wednesday, supporters from across the country (including Community Alliance leaders, board members, staff and other volunteers) participated in our annual March on Capitol Hill by spending a long day visiting legislators to urge them to continue Federal TSC research funding. Over the course of the week, these tenacious advocates visited 326 members of the House of Representatives and 82 Senators.
March on Capitol Hill: House Speaker Paul Ryan and Kristin DeGueme; President and CEO Kari Luther Rosbeck and Board Chair David Fitzmaurice; Natasha Hall with Senator Patty Murray.
More March on Capitol Hill: Laura Marks, Rep. Steve King and Cindy Hammerquist; Mary Ann Scroggins and David Stegemann; Max Vertolotti, Rep. Illeana Ros-Lehtinen and Vanessa Vasquez.
The TS Alliance presented a Congressional Briefing from 5 to 7 pm Wednesday evening at the Capitol Visitors Center, where Rep. Mike Fitzpatrick welcomed attendees, who then heard Shelly Meitzler, mom of two children with TSC, discuss how Federally-funded TSC research has helped her family (view a Facebook video here). Next, Drs. Martina Bebin and Brandon Manning provided updates on their TSC research and next steps in potential drug development and the first preventative clinical trial for epilepsy in TSC.
If you haven't done so, join our Government Action Team now! Also, be sure to visit our Outreach Toolkit for documents to help you schedule your appointments and other helpful items.
Please contact Katie Smith at (800) 225-6872 or firstname.lastname@example.org if you have any questions. We look forward to speaking to you then.