Nearly 200 Volunteers Advocate for Loved Ones During 11th Annual Teen Advocacy Day

Nearly 200 people from across the country -- including teens from 38 states -- came to Washington, D.C., on June 27 to advocate for the needs of their loved ones living with cystic fibrosis during the Cystic Fibrosis Foundation's 11th Annual Teen Advocacy Day.

July 2, 2019 | 3 min read

Nearly 200 advocates from across the country participated in the Cystic Fibrosis Foundation's 11th annual Teen Advocacy Day on June 27 in Washington, D.C. Teens, ages 12-18, led the charge on Capitol Hill, holding more than 215 meetings with members of Congress to advocate for their loved ones with cystic fibrosis.

During their meetings, teens shared their personal experiences with CF and its impact on the lives of their families and loved ones. They explained the complex and intensive care needed by their loved ones as they seek to live long, healthy lives in the face of the daily challenges of cystic fibrosis.

Their stories illustrated why they were asking lawmakers not to sacrifice quality of coverage in the name of affordability. Specifically, teens urged their members of Congress to support comprehensive health insurance that covers the full range of care and services that people with CF need to stay healthy. 

Teens spoke with Sen. Martha McSally (R-Ariz.) to advocate on behalf of their loved ones with CF.

Additionally, teens described the hope on the horizon for people with CF because of advances in research and drug development, including the potential approval of a triple-combination therapy by the U.S. Food and Drug Administration (FDA) in 2020. Although they noted that the therapy is promising, it won't help everyone with CF, and it is not a cure. The Foundation's work will not be finished until everyone living with cystic fibrosis has access to a cure. In describing the advances in therapies and medications, the teen advocates noted the continued need for robust and reliable funding for the FDA and the National Institutes of Health, organizations that play crucial roles in advancing safe, effective therapies for people with cystic fibrosis.

Cambria Babbitt and Sophie Malchus -- Foundation interns and former Teen Advocacy Day attendees -- mentored this year's participants and discussed the importance of sharing personal stories to advance policies that improve the lives of people living with CF. Both Babbitt and Malchus have siblings with CF.

Advocates gathered on the steps of Capitol Hill after sharing their stories with members of Congress and their staff.

To find out how to get involved in advocacy efforts with the Foundation, text FIGHTCF to 52886, or sign up for the Foundation's advocacy alerts.

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