On March 7, 150 advocates rallied together in Washington, D.C., to advocate for the cystic fibrosis community during March on the Hill. The 13th annual Foundation event allowed advocates to share their CF stories with lawmakers and ask for protections for people with pre-existing conditions as well as robust funding for the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA).
An additional 1,600 advocates from around the country sent messages to their lawmakers during the Foundation’s second annual Online Day of Action. These advocates were led by Marissa Benchea and Rima Manomaitis, both adults with cystic fibrosis. Marissa is a longtime volunteer of the Foundation who received the Alex Award in 2014 for her continuous inspiration to others with the disease. Rima, a frequent Foundation blog author, uses her blog, Lung Story Short, to raise awareness about life with CF. Online messages to lawmakers amplified the presence of the CF community on the Hill, while also supporting the Foundation’s policy priorities.
In their more than 315 meetings with members of Congress, attendees educated elected officials about living with cystic fibrosis and advocated for:
- Affordable, adequate health coverage that remains critical for people with CF to access the highly specialized care they need to live longer, healthier lives.
- The support of robust, reliable funding for the NIH and the FDA. Specifically, advocates asked for $41.6 billion for the NIH to help ensure innovation in basic research that has laid the groundwork for a full pipeline of CF therapies.
During in-person trainings held on Wednesday prior to the Thursday March on the Hill event, participants also discussed the importance of advocating from home and creating a culture of advocacy that continues beyond lobbying days.
“Advocacy is as much a part of [our son’s] care plan as any medication,” said Jaci Strube, national advocacy co-chair for the Foundation. “Interacting with our legislators at home is where our connections have grown roots. Whether showing our care center off, or the ability to have a longer meeting, in-district advocacy has been crucial to building relationships with our representatives.”
To stay informed about the Foundation's advocacy work and to get involved today, text “FIGHTCF” to 52886 or sign up for the CF Foundation's Advocacy Alerts.