The Cystic Fibrosis Foundation believes in empowering our community to advocate for the needs of people with cystic fibrosis. This includes providing nonpartisan tools to help enable the CF community to exercise their right to vote. We recently shared several resources to help the CF community prepare for Election Day. Check out your voter registration status, make a voting plan, and view our list of questions for assessing candidates’ positions on health care issues. 

The Cystic Fibrosis Foundation has long advocated for improvements in newborn screening, a nationwide public health program that screens for several diseases at birth, including cystic fibrosis. While all 50 states and the District of Columbia screen babies for CF, approaches vary by state. These variabilities can lead to delayed diagnoses and unintended health inequities that leave some babies behind.  

Through grants, advocacy, and consensus guideline development, the Foundation continues to advance its Newborn Screening Initiative and improve newborn screening for CF nationwide. Read more about the Foundation’s newborn screening efforts, including the opportunity to comment on the draft guideline and share your feedback.

Dan Hamer, Advocacy Chair for the Nevada chapter, recently wrote a Letter to the Editor that was featured in the Las Vegas Sun. Dan’s letter explains why the PASTEUR Act is critical to the CF community and calls on Congress to pass the bill this year. Letters to the editor (LTEs) are one of the most widely read sections of local newspapers – especially by lawmakers – and can be an effective way to make your voice heard in your community and drive members of Congress to take action.  

Want to write an LTE? Email our Policy & Advocacy team for talking points and guidance.

During Congress’s August recess, many of our Congressional Captains were busy facilitating in-district meetings with their lawmakers. As a result of CF advocates’ in-district meetings, Rep. Gabe Amo (RI-01) and Rep. Tim Burchett (TN-02) both agreed to cosponsor the PASTEUR Act. Thank you to Congressional Captains Chris Whatmough and David Wells for their successful advocacy!  

A special shoutout also goes to our Arizona Congressional Captains, who held in-district meetings with four offices during the recess: Rep. Greg Stanton (AZ-04), Rep. Raul Grijalva (AZ-07), Rep. David Schweikert (AZ-01) and Rep. Debbie Lesko (AZ-08); another Arizona Captain received a personal call from his member of Congress, Rep. Juan Ciscomani (AZ-06), in recognition of his tireless advocacy – a testament to the power of strong constituent relationships.  

If you’ve met with your member of Congress back at home, we want to hear about your advocacy efforts. Complete our In-District Meeting Feedback Form to share more about your meeting.

The CF Foundation has launched a survey to gather insights from our community to inform our next long-term strategic plan. It’s important that our next plan reflects the diverse and evolving needs of the CF community – including dedicated advocates like you. Support the development of our next plan by sharing your perspectives in a 10-minute survey by October 16.

Complete the survey today! >>