On June 27, more than 70 teens — including two dozen who live with cystic fibrosis who participated online — advocated for people with CF during the Foundation’s 16th 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.  

“It’s an incredible experience to hear these young adults encapsulate not only their experiences with cystic fibrosis but the experiences of their loved ones,” said Mary Dwight, chief policy and advocacy officer of the Foundation. “Advocacy plays a vital role in propelling us toward our mission. These teenagers, who may be just starting on their advocacy journey, will continue the Foundation’s tradition of bringing people with CF into the center of policy discussions. They are truly advocacy in action.”  

In nearly 140 meetings with congressional offices, teens called on their members of Congress to pass the PASTEUR Act, a bill that can potentially revitalize the antibiotic development pipeline by making it easier for small drug development companies to bring novel antibiotics into the hands of patients without going bankrupt. 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 CF community amplified the teens’ efforts by participating in the Foundation’s Online Day of Action, sending nearly 1,800 letters to their members of Congress supporting the PASTEUR Act. 

Previous Teen Advocacy Day advocates Katherine Black, Sloane Kann, and Brooklyn Klein, siblings of people living with CF, joined Megan Riordan and Sydney Willig, young adults with cystic fibrosis, as Teen Advocacy Day interns. During their tenure, the group lent their expertise to help craft the event’s program and connect with virtual and in-person attendees.  

Teen Advocacy Day marks the final of three advocacy events held this Spring. In March, nearly 350 advocates participated in the 17th annual March on the Hill, meeting with 214 offices to urge Congress to pass the PASTEUR Act and the HELP Copays Act. The event was the largest in-person advocacy event in the Foundation’s history. In April, more than 30 adults living with cystic fibrosis representing 21 states participated in the Cystic Fibrosis Foundation’s virtual advocacy event, In Our Own Words: A CF Advocacy Day. The event provided adults with CF a unique opportunity to share with Congress their personal experiences living with the disease as they advocated for policy change and formed connections with each other in a virtual environment. Cindy Baldwin, an adult with CF who participated in the event, shared her experience and the role storytelling and advocacy play in her life on the CF Foundation blog.  

Advocating With the CF Foundation

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

In 2024, community members have sent nearly 14,500 messages to members of Congress and state legislators to support policies that protect the interests of the CF community, holding more than 450 meetings with members of Congress in 2024 alone.  

Find out more about the Foundation’s advocacy work by visiting cff.org/advocate.