2009 SF Capitol Hill Visit A Great Success
The testimonials are in, and Scleroderma Foundation advocates who attended the two-day Capitol Hill Visit believe great strides were made on behalf of the scleroderma community. A total of 39 advocates from across the country gathered together on October 7th and 8th in Washington D.C. to meet with lawmakers and gain additional co-sponsors for the H.R. 2408 and S. 1545 “Scleroderma Research and Awareness Act”. Advocates helped to gain support of both the House and Senate bills, and generated a tremendous amount of awareness for the disease.
The House of Representatives Bill 2408 was first introduced by Rep. Lois Capps of California and lead co-sponsor, Rep. Vern Ehlers of Michigan on May 14th, 2009. Senator Kirsten E. Gillibrand later introduced the Senate Bill 1545 on July 30th and urged her fellow lawmakers to vote in favor of scleroderma research funding. With the help of the Foundation’s Advocacy Committee, HMCW staff, and grassroots advocates, co-sponsorship for the scleroderma bills has steadily increased since their initial introduction into Congress.
The Capitol Hill visit was intended to bolster the momentum of the scleroderma bills and help to gain more support from lawmakers, as well. On the first day of the Capitol Hill visit, Scleroderma Foundation advocates met in the morning to watch a welcome presentation and were divided into seven teams according to their state of residence and/or Chapter affiliation. From there, the teams were handed their daily itinerary of meetings, which separated their meetings with House and Senate lawmakers over the two day visit.
Judy Nichols and her husband Ken, who traveled to Washington D.C. with Laura Dyas, Executive Director of the Michigan Chapter, met with over 15 different representatives. “Our schedule was very busy,” recalls Judy, Scleroderma Foundation member and advocate. “Our team had only 15-20 minutes to spend with each congressperson, and so we made each minute count by sharing our personal stories about scleroderma and talking about the scleroderma bills.” Indeed with their days starting at 8am and ending at 6pm, advocates like Judy had little time to rest while visiting Capitol Hill. With over 78 meetings with lawmakers scheduled within a 48 hour time frame, all teams made sure to deliver a personal and powerful message to congress about the need for greater funding for scleroderma research.
Around mid-afternoon, advocates gathered with lawmakers to enjoy an informative luncheon hosted by HMCW and the Scleroderma Foundation. Dr. Daniel Furst, President of the Southern California Chapter’s Board of Directors and member of the Foundation’s Medical Advisory Board, gave a short presentation on scleroderma for all in attendance. Following Dr. Furst’s welcome was former California state assemblywoman Sharon Runner, who offered a patients perspective on the disease and advocated for lawmakers’ support of the scleroderma bills.
Thanks to the unwavering energy and determination of the advocacy teams, the Scleroderma bills won the support of an additional 6 confirmed co-sponsors from the House of Representatives, bringing the current totals to 63 co-sponsors in the House and 4 in the Senate (with the possibility of even more signing on in the coming weeks). Thanks to the collaborative efforts of HMCW, The Scleroderma Foundation’s Advocacy Committee, Chapter staff, and scleroderma supporters nationwide, the Scleroderma Bills have gained even greater support from Congress.
Brian Ross Adams, Executive Director of the Southern California Chapter and Chair of the Advocacy Committee remarked that the scleroderma bills would provide a giant step forward in finding a cure for the disease. “When passed, this bill will dramatically increase scleroderma research dollars by 5 million a year for the next 3 years. The Advocacy Committee and patient volunteers have worked tirelessly to ensure that the bill has the necessary support. We are confident we are on the verge of a major change in NIH funding.&ldquo
There is still time to do your part in helping support the Scleroderma Bills in Congress.& Visit http://www.scleroderma.org/advocacy/advohome.shtm for more information about the two scleroderma bills, H.R. 2408 and S. 1545, and how to become an advocate. |
