Teens Travel to Washington, D.C., to Speak Out for Cystic Fibrosis

June 24, 2011

Teen Advocates with Markey
Rep. Edward Markey (D-MA), right, shared words of thanks and inspiration with teen advocates and their families on the U.S. Capitol steps.
Nearly 50 teens representing 24 states gathered in Washington, D.C., to advocate on behalf of their brothers, sisters, parents and cousins with cystic fibrosis at the Cystic Fibrosis Foundation’s third annual Teen Advocacy Day.

The teens, ranging in ages from 12 to 18, spent the day meeting with members of Congress to raise awareness about CF, sharing personal stories about their families’ experience with the disease.

“My brother Sean is very small because he has CF, but he doesn’t let his size hold him back whether he’s in school or on the ice playing hockey,” said Neil Flavin, 17, from Saline, Mich. “I want our government to know that Sean and all people with CF are worth the money and research our country spends to improve their lives.”

The teens asked their members of Congress to support funding for the National Institutes of Health and the Food and Drug Administration, and to help sustain Medicaid funding. As a result of their efforts, three new members joined the Congressional CF caucus, chaired by Reps. Edward Markey (D-MA) and Cliff Stearns (R-FL).

A highlight of the day was meeting Reps. Markey (D-MA), Tom Marino (R-PA) and John Fleming (R-LA) on the U.S. Capitol steps for a photo.

Teen Advocacy Day was led by National Advocacy co-chairs Peter and Amy Barry and their son Will Barry, 17. Will’s 15-year-old brother Jamie has CF. “We had a great day making our voices heard in our nation’s capital,” Will said. “Sharing our family members’ and friends’ stories with our elected officials can help bring us one step closer to our goal of a cure for cystic fibrosis.”

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Click play to view photos of the 2011 Teen Advocacy Day