Join Us on Capitol Hill
Tuesday, Oct. 1, 2013
|Members of the Scleroderma Foundation visit with representatives from Tennessee during a visit in 2012.|
A contingency of patients, caregivers, chapter leaders and National staff will descend on Capitol Hill on Tuesday, Oct. 1, to participate in face-to-face meetings with members of Congress and/or their key medical affairs staff member(s).
The goal of the Capitol Hill visit is to increase awareness of scleroderma and its comorbid conditions among leaders in Congress and key Federal agencies, including the National Institutes of Health (NIH), the Department of Defense (DOD) and the Centers for Disease Control and Prevention (CDC). Key to these efforts is generating awareness of the “Scleroderma Research and Awareness Act,” a scleroderma-specific bill before both Houses of Congress that would increase funding for scleroderma-related research at the NIH through already-appropriated spending. Additionally, the Scleroderma Foundation advocates for funding for the NIH and the DOD’s Peer Review Medical Research Program.
Participants will be divided into teams, with each team having as many as 15 meetings with Congressional offices throughout the day.
Here's your opportunity to share your story about scleroderma's impact on your life. Pairing people living with scleroderma with members of Congress who sit on key committees is extremely valuable to advance awareness of scleroderma and our goals for more scleroderma research funding at federal levels.
|Key Congressional Districts|
Capitol Hill Day is a long and physically challenging day, but extremely rewarding for those who participate. Sometimes distances between offices are significant, requiring participants to do a great deal of walking.
- Evening Before: The Foundation will host a briefing dinner that provides participants with information packs, including talking points for each meeting they and their team will have the following day. An extensive Q&A session is held.
- Capitol Hill Day: Your day begins early with teams assembling, along with your team leader (a member of the Foundation’s advocacy agency, HMCW), to review the schedule and identify constituent-leaders for the meeting. You will have approximately 15 meetings throughout the day on Capitol Hill in both the House of Representatives and the Senate.
will be an designated lunch break. Lunch is generally held in one of the
House or Senate office building’s many cafeterias.
- On this Capitol Hill Day trip, the Foundation will be hosting a Congressional Briefing Breakfast or Lunch (TBD), which members of Congress and/or their key staff are invited to attend to learn more about scleroderma from medical experts and a patient spokesperson.
- Following lunch, meetings resume through late afternoon, until approximately 4:30 p.m.
- Conclusion of meetings, participants depart individually to airport