Representing 26 states, the participants arrived on Capitol Hill prepared to educate their lawmakers on ways they can help in the battle against cystic fibrosis. Meeting in small groups with legislators and their staff, they shared their personal stories of caring about someone living with CF. Speaking from the heart, each teen took the opportunity to reveal the daily struggles that many people living with CF have to endure.
During the 182 meetings attended throughout the day, the teens asked members of Congress to cosponsor the Ensuring Access to Clinical Trials Act (EACT). This bill was drafted to make the 2010 Improving Access to Clinical Trials Act (IACT) permanent so that people with rare diseases could participate in clinical trials without fear of losing their government benefits.
The teens also advocated for increased funding for the National Institutes of Health and the Food and Drug Administration, and invited members of the House of Representatives to join the Cystic Fibrosis Caucus.
"I started attending Teen Advocacy Day to help my brother fight his battle with cystic fibrosis,” said CF Foundation intern and returning participant Shannon Farrell. “After participating in this event for five years I feel like I have made the impact I wished for, and I'm so excited to watch this incredible program continue to make an impact on the thousands of people like my brother."
Thinking about becoming a teen advocate? Visit the Advocate With Us page to learn more about how you can help.