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50 Teens Visit Capitol Hill to Speak Out for Loved Ones with CF

July 5, 2012

This year’s fourth annual Teen Advocacy Day was the largest yet, with 50 teens and their families traveling to Washington, D.C., from across the country to visit with their members of Congress and speak out on behalf of their family and friends living with cystic fibrosis.

The teens, ranging in age from 11 to 18, met with representatives and senators from their area to discuss how CF affects their loved ones and how members of Congress can support the CF Foundation’s mission to cure this disease.

Advocates held 170 meetings throughout the day to discuss the importance of funding for CF research and drug development, as well as highlight the critical need for access to specialized CF care. The teens also thanked members for passing the Expanding and Promoting Expertise in Review of Rare Treatments (EXPERRT) Act just one week before.

Teens kicked off the day at a special breakfast with Sen. Sheldon Whitehouse (D-RI), who spoke about the importance of advocacy. Teens took photos with CF Caucus Co-chairs Reps. Ed Markey (D-MA), Tom Marino (R-PA) and Cliff Stearns (R-FL), as well as CF Caucus member Rep. John Fleming (R-LA). After the meetings, Rep. Tom Marino and his daughter Chloe, who has cystic fibrosis, joined the teens at a celebration dinner and shared their story.

The CF Foundation would like to thank Genentech for their generous support for this event.

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