March 12, 2009

Facebook, Twitter, Bloggers, and Advocates on Capitol Hill Create the Largest Lupus Advocacy Day in History

1300 Advocates Make Their Voices Heard

The real and virtual worlds came together on March 3, making the Eleventh Annual Advocacy Day the largest and most successful in history. We used social media and the Internet to spread the word and encourage people to get involved. E-cards were sent to our constituents with suggestions on how they could help, and we asked them to send their own e-cards to friends and family. We asked people to change their Facebook status, post information on their blogs, and use Twitter to keep everyone updated on Advocacy Day activities. A sea of advocates covered in purple also descended on Capitol Hill delivering the same message to Members of Congress -- federal funding for lupus research must be increased.

Lupus advocates drove long hours, endured bad weather, and overcame personal challenges to join us on Capitol Hill. Advocates prepared for their visits by participating in a day-long training that was kicked-off with the theme music from the movie Rocky, and the distribution of purple (the signature color for lupus) scarves. The Rocky theme music was used to inspire and motivate the advocates, while demonstrating the tenacity and fighting spirit of people with lupus. During the training advocates celebrated past successes, learned how federal funding is being used to advance lupus research, and discussed how to talk to Congressional Members and staff about our legislative agenda.

On Advocacy Day advocates wore their purple scarves. To reinforce the message of the day, they also wore stickers with the message "Eisenhower was president the last time the FDA approved a drug for lupus." Most people were surprised to learn that it has been 50 years without a new, FDA-approved lupus drug.

Senator Barbara Mikulski (D-MD) delivered a speech during the Advocacy Day luncheon that energized the advocates and brought the crowd to their feet. She reminded everyone how important advocacy is, and that we have great hope and potential for change. Senator Mikulski has always been a health care champion and patient advocate, and the LFA was pleased to present her with the Distinguished Leadership Award for her work on the Lifespan Respite Care Act, and past support of the Lupus REACH Amendments.

Advocates were successful in forming new relationships with Members of Congress and staff, and more importantly creating new champions for people with lupus on Capitol Hill. During many of the visits Members of Congress or their staff also found new connections to lupus. One advocate learned that a staff member attended high school with her daughter who has lupus. This is just one of many stories, and is a powerful reminder of how lupus touches everyone, and that it reaches beyond just the person living with the disease. We are thrilled with the results the lupus advocates achieved and thank everyone for their participation in Advocacy Day activities.

In the coming days and weeks we will be posting photos from our advocates on Flickr, and a video documenting their experience on Capitol Hill will be posted on our website and YouTube.

We have made our voices heard loud and clear on Capitol Hill -- and will continue to do so. With your ongoing support we believe we can achieve our goals and get the funding for lupus research we need that will lead to new treatments, and ultimately a cure.