CF Teens Advocate on the Hill

A group of 62 enthusiastic teen advocates gathered in Washington, D.C. on June 25 to bring awareness of cystic fibrosis to Capitol Hill. During the 7th Annual Cystic Fibrosis Foundation Teen Advocacy Day, the teens highlighted the vital role that the CF Foundation plays in finding a cure for this life-threatening genetic disease. 

| 2 min read
Teen advocates attend a meeting with their member of Congress during Teen Advocacy Day
Jack Richter, along with his father John and Ray Fakhoury of the CF Foundation, shares his story with a staff member from the office of Sen. James Inhofe (R-Okla.)

 

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.

Teen advocates pose with Sen. Markey during Teen Advocacy Day.
Kimberly Myerson, Michaela Myerson, Amanda Wiklund, Lauren Myerson and Lisa Wiklund meet with Rep. Edward Markey (D-MA), Co-Chair of the Cystic Fibrosis Caucus.

 

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.

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About the CF Foundation | Public Policy | Advocacy
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