It’s been a busy year for the cystic fibrosis community with history being made at our largest ever March on the Hill and our first standalone virtual lobby day for adults living with CF, In Our Own Words!

Advocacy is an essential part of the CF Foundation’s mission, and we work year-round along with advocates like you to advance policies that bolster access to adequate, affordable care and foster research and development that could lead to a cure.

We’re launching this advocacy newsletter to share more about the work happening behind the scenes in Washington, D.C. and in states across the country – and how you can be involved.

At this year’s Volunteer Leadership Conference, Mary Dwight, the Foundation’s Chief Policy & Advocacy Officer, joined advocates Melissa Shiffman and Peter Barry to discuss some of the many ways we advocate for people living with CF, including our work on prescription drug affordability boards, state-sponsored CF programs, and the volunteer program designed to ensure lawmakers keep the needs of the CF community top of mind.    

Did you know the Foundation educates state policymakers on the complexities of living with cystic fibrosis and the importance of having access to affordable, adequate care? The CF Foundation has been busy identifying access issues, tracking relevant legislation, and engaging with state lawmakers and other government decision-makers on the needs of the cystic fibrosis community. See how we’ve weighed in on our statements, letters, and regulatory comments page, where you can sort by state or issue.

View recent CF Foundation Statements, Letters, and Regulatory Comments >>

Since its launch in 2020, the Congressional Captains program has gained more than 230 volunteer leaders who act as the conduit of information between the CF community and their members of Congress. Working together with their chapter’s Advocacy Chair and Foundation staff, Captains play an important role in mobilizing their communities to advance the Foundation’s policy principles and helping to grow the advocacy network in their congressional districts, all while building relationships with their representatives at home.

Want to join our efforts? Contact your local chapter to learn more about the Congressional Captains Program >>

Thanks to your voices, the PASTEUR Act and HELP Copays Act continue to pick up new cosponsors in Congress. Make sure your members know how important these bills are to the CF community. Take action today!

Have you met with your member of Congress or their staff back at home? We want to hear about your advocacy efforts! Complete our In-District Meeting Feedback form to share more about your meeting.