On March 4 and 5 of 2008, The Lupus Research Institute (LRI) National Coalition held its second annual Lupus Advocacy Day in Washington D.C. The LNFC was delighted to have two representatives attend this year’s training and advocacy day. Carol Siebenmorgen, LFNC board member, and Roseanna Lavia joined about 60 other representatives from many lupus organizations from around the country.
On day one of the event the participants enjoyed a full day of training on fundraising tips and tactics; board development strategies; and on-line marketing techniques. At the end of the first day’s session, we were trained and prepared for the next day’s meetings on Capitol Hill.
As a member organization of the LRI National Coalition, there were three specific issues that we were asked to discuss with our representatives:
- Urge Congress to seek a progress report from the National Institute on Health (NIH) on the Future Direction of Lupus Research Plan
- Urge Congress to request that $5M be included in the appropriation bills for lupus education among health professionals
- Urge Congress to request a 6.6 % increase in funding for the NIH. The NIH's funding has been flat since 2003
Roseanna and Carol joined several other California constituents to meet with representatives for Senator Barbara Boxer and Senator Dianne Feinstein.
In the afternoon they headed out to meet with staff assistants for the local San Jose representatives: Congressman Mike Honda, and Congresswoman Zoe Lofgren. Packets of information were left with each representative they met with, as well as with many others they were not scheduled to meet that day.
The day was rounded off with a great opportunity to attend a Town-Hall Meeting with Senator Boxer. Each group in attendance had the opportunity to stand and let her know why they were there and what they needed from her. Our group made a wonderful and passionate plea for lupus awareness and support of our three advocacy day requests. Senator Boxer seemed genuinely sympathetic to our cause and agreeable to our requests.
This day on Capitol Hill was a great success and had a tremendous impact. Including all participants in attendance that day, there were 15 states represented and 110 meetings held with congressmen and women and senators from across the US. To read the full story, visit our website, www.lfnc.org.
