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CF Foundation Teen Advocates Share Their CF Stories with Members of Congress

July 1, 2014

Teen Advocacy Day 2014

Senator Ed Markey (D-MA) with the 2014 Teen Advocacy Day participants.

Teen volunteers from 27 states across the country gathered in Washington, D.C., on June 26 to advocate for friends and loved ones who have cystic fibrosis during the Cystic Fibrosis Foundation’s sixth annual Teen Advocacy Day.

The teens met with more than 230 legislators on Capitol Hill to speak on behalf of friends and relatives about their personal experiences with CF and discuss issues important to the CF community.

The teens urged legislators to increase funding to the National Institutes of Health and the Food and Drug Administration. Both agencies play a vital role in supporting CF research and drug development and the advancement of promising new treatments for the disease.

“It is a privilege to come to our nation’s capital to talk with representatives about why this battle is important to me and my family, and why it should be important to members of Congress as well,” said Carlos Santos, age 19, a veteran of Teen Advocacy Day, whose twin sister was diagnosed with CF at birth.

“Advocacy plays a vital role in the Foundation’s mission to improve the lives of people with cystic fibrosis and find a cure,” said Robert J. Beall, Ph.D., President and CEO of the Cystic Fibrosis Foundation. “By sharing their stories, these young volunteers are raising awareness about the challenges of living with CF, and the importance of our mission to end this disease.”

Want to be a teen advocate? Check out the Teen Advocacy page to learn more.

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.