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July 2010

Teens Speak Out on Capitol Hill

Teens Speak Out - Connections - July 2010 - Cystic Fibrosis Foundation
Rep. Edward J. Markey [D-MA],
co-chair of the Congressional Cystic Fibrosis Caucus, encourages teen advocates from across the country.

The sweltering heat did not deter teens and their families from across the nation, who visited Washington, D.C., to advocate on Capitol Hill on behalf of their siblings and cousins with cystic fibrosis at the CF Foundation’s second annual Teen Advocacy Day on June 24.

The teens, ranging in ages from 12 to 17, met with members of Congress to explain how CF affects their families and how senators and representatives can play a crucial role in helping the CF Foundation control and ultimately cure the disease.

CJ Santos, 15, was one of the 24 teens who participated in Teen Advocacy Day. He met with Reps. Eric Cantor from Va. and John Boehner from Ohio, as well as Sen. George LeMieux from Fla. “I’m here for my twin sister, Sabrina, who was diagnosed with CF at birth,” CJ explained. “She’s always looked at this disease face-forward — she has always fought it, and I want to help.”

In addition to sharing their moving stories, teens pressed their elected officials to fund drug research and increase access to clinical trials for those with rare diseases by passing the Improving Access to Clinical Trials Act. As a result of their efforts, eight new Congress members have signed on as co-sponsors of the bill and one new member has joined the CF caucus.

Teen Advocacy Day was led by Advocacy Chair Peter Barry and his son Will Barry, 16. “Today, these kids learned that they have the power to make their voices heard in Washington,” Peter said. “Telling their stories to their elected officials has the potential to get us one step closer to our ultimate goal of finding a cure.”

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