Teens Advocate on Capitol Hill During the Foundation’s 15th Annual Teen Advocacy Day

More than 60 teens from across the country — almost half of whom live with cystic fibrosis — advocated for support of the PASTEUR Act.

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On June 22, more than 60 teens — including nearly 30 of whom live with cystic fibrosis who participated online — advocated for people with CF during the Foundation’s 15th annual Teen Advocacy Day. The event allows teenagers in the CF community to speak directly with their lawmakers on issues important to them and their loved ones.  

“For 15 years, hundreds of teenagers have started their advocacy journey during Teen Advocacy Day to advance issues that matter to people with CF,” said Mary Dwight, senior vice president and chief policy and advocacy officer at the Cystic Fibrosis Foundation. “The Foundation’s mission is powered in part by the stories and voices of the CF community, and that is a crucial reason why we continue to see progress for those living with CF.”

Teen advocates Brooklyn Klein and Elliot Ellis-Davies with co-chairs of the CF Caucus, Rep. Mark Amodei (NV-02), left, and Rep. Jim McGovern (MA-02), right on Capitol steps.
Teen advocates Brooklyn Klein and Elliot Ellis-Davies met with co-chairs of the CF Caucus, Rep. Mark Amodei (NV-02), left, and Rep. Jim McGovern (MA-02), right.

In more than 125 meetings with congressional offices, teens called on their members of Congress to support the PASTEUR Act, a bill that addresses the increasingly barren antimicrobial pipeline. Because of the thick, sticky mucus in their lungs, people with CF face a higher risk for infections, and many rely on antibiotics as part of their regular care. Over time, this can lead to infections that are resistant to treatment. The PASTEUR Act seeks to address antimicrobial resistance by incentivizing the development of highly innovative antimicrobials to fight deadly infections.

L to R) Advocates Diedre Burke, Lillian Burke, and Emma Henry and Amy Henry, meet with Beth Nelson, health policy director in the office of Senator Todd Young of Indiana, center.
L to R) Advocates Diedre Burke, Lillian Burke, and Emma Henry and Amy Henry, meet with Beth Nelson, health policy director in the office of Senator Todd Young of Indiana, center.

The event was also coupled with an Online Day of Action where CF community members sent letters to their members of Congress to amplify the voices of our teen advocates on Capitol Hill. With Nicole Kohr, an adult living with CF, serving as the event’s community ambassador, the Online Day of Action resulted in more than 3,500 messages to Congress from advocates in all 50 states.  

In addition to the PASTEUR Act, Online Day of Action participants asked their members of Congress to support the HELP Copays Act, a bill that will help to address the use of copay accumulators programs, an increasingly problematic practice that has caused financial and administrative burden to many in the CF community.   

I am so proud of the teens this past week for using their stories to highlight the need for real policy solutions for our community,” continued Dwight. “They used their voice, creativity, and drive to spark change for themselves and their loved ones.”

National Volunteer Advocacy Co-Chairs, Jeremy Olimb, a father of children with CF, and Marissa Benchea, an adult living with CF, on Capitol Hill.
National Volunteer Advocacy Co-Chairs, Jeremy Olimb, a father of children with CF, and Marissa Benchea, an adult living with CF, on Capitol Hill.

Advocating With the CF Foundation 

As part of the Foundation’s mission to cure cystic fibrosis, the CF Foundation, alongside the cystic fibrosis community, advocates for policies and programs that promote access to highly specialized CF care and advance research and drug development.  

This year alone, community members have sent more than 30,000 messages to members of Congress and state legislators to support policies that protect the interests of the CF community, met with more than 200 congressional offices in Washington, D.C., and at home, and continued to build their networks locally to expand the reach of the community across the country.  

Interested in becoming an advocate? Find out more about the Foundation’s advocacy work on cff.org/advocate.

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