Advocates on Steps of Congress 2013
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JOIN US FOR THE ADVOCACY SUMMIT - CAPITOL HILL, MAY 5-6, 2014                         

The Scleroderma Foundation’s Advocacy Program provides scleroderma patients/activists from across the nation the opportunity to meet with their U.S. Senators and Representatives to educate policy makers about scleroderma and generate awareness of the  “Scleroderma Research and Awareness Act” – a scleroderma-specific bill before both Houses of Congress that increases funding for scleroderma-related research at the NIH through already-appropriated spending.

Of critical importance in 2014, is our drive to have scleroderma re-listed as an approved condition that is eligible for research funding through the Department of Defense’s Peer-Reviewed Medical Research Program.  In spite of the scleroderma community’s tremendous efforts, scleroderma was not included as an approved condition in the Department of Defense’s budget for Fiscal year 2014. 

If you are a person living with scleroderma, and are a good listener and speaker, have an interest in the political process, and are willing to tell your story to our lawmakers on Capitol Hill, please submit an application to join us!

Capitol Hill Day Activities

  • Participate in face-to-face meetings with Members of the Senate and the House and/or their key medical affairs staff member(s)
  • Participants are divided into teams, with each team having as many as 15 meetings with Congressional offices throughout the day.
  • Share first-hand stories about the impact your condition has had on your life.  Paring people living with scleroderma with Members of the Senate and House who sit on key committees is extremely valuable for advancing awareness of scleroderma and advancing our goals for more scleroderma research funding at federal levels.
Capitol Hill Day is a long and physically challenging day. Sometimes distances between offices are significant, requiring participants to do a great deal of walking, but it is extremely rewarding for those who participate

Schedule

 

  • Evening before – Monday, May 5:  Advocates arrive during afternoon. A Briefing dinner is hosted that evening that will provide participants with information packs with talking points for each meeting they and their team will have the following day.  An extensive Question and Answer Period is part of this information dinner meeting.  Attendance is mandatory. 
  • Capitol Hill Day – Tuesday, May 6:  The day begins early with teams assembling with their team leader (a member of the Foundation’s advocacy agency, HMCW) to go over the schedule and identify constituent-leaders for the meeting.  You will have approximately 15 meetings throughout the day, both on the House of Representatives side of Capitol Hill and on the Senate side.
    • Lunch:   On this trip, the Foundation will be hosting a legislative briefing lunch (TBD) to which Members of Senate 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 PM
    •  Conclusion of meetings, participants will be transported back to hotel.
  • Wednesday, May 7– participants depart individually to airport

All persons interested in participating in this event must complete an application - download here.

DEADLINE EXTENDED:  APRIL 4, 2014

Preference will be given to those who can demonstrate the following:

  • Are members of the Foundation
  • Are a registered voter
  • Are a person living  with scleroderma
  • Are regular participants in the Foundation’s Advocacy Program
  • Are first-time participant in a Capitol Hill Day event
  • Reside in one of the key states listed in table below
KEY STATES
ALABAMA ALASKA ARKANSAS CALIFORNIA ILLINOIS INDIANA
IOWA KENTUCKY LOUISIANA MAINE MARYLAND MISSISSIPPI
MISSOURI RHODE ISLAND SOUTH CAROLINA SOUTH DAKOTA TENNESSEE VERMONT
WASHINGTON           

Scholarship opportunity:  Thanks to the generous support of Actelion Pharmaceuticals US, Inc., the Scleroderma Foundation is able to provide a limited number of full and partial scholarships for people with scleroderma to participate in advocacy efforts. For details, see application - please download here.  

DEADLINE EXTENDED:  APRIL 4, 2014

 

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