Teens Meet with Members of Congress to Raise Awareness About Cystic Fibrosis

After more than six years of dedicated service as co-chair of the Congressional Cystic Fibrosis Caucus, Rep. Edward Markey (D-MA) has stepped down from the post as he assumes new responsibilities in the U.S. Senate. Rep. Jim McGovern (D-MA) will replace Markey, joining Rep. Tom Marino (R-PA) as co-chair of the Caucus.

July 1, 2013 | 3 min read
Teen and parent pose on Capitol Hill during advocacy event.
Fifty-five teens from across the country met with members of Congress to help raise awareness about cystic fibrosis and lobby for funding for medical research and drug review during Teen Advocacy Day, held last week in Washington, D.C.

Teenagers from 23 different states gathered in the nation’s capitol to advocate on behalf of their brothers, sisters, parents, cousins and friends who have cystic fibrosis at the Cystic Fibrosis Foundation’s fifth annual Teen Advocacy Day, held last week.

The 55 teens met with more than 200 members of Congress to tell personal stories about CF. The group also encouraged their representatives to support specialized, affordable CF care and funding for medical research.

During their visit, the teens talked about how their lives and their families’ lives are impacted by the disease.

“I lost my cousin, Josh, to cystic fibrosis a year ago. He can’t speak, but I can, and that’s why I’m here today,” said Kaylyn Thigpen, 17 of Crawfordville, Fla. “Even though Josh lost his battle, I think it’s important for our elected officials to know about the other 30,000 Americans living with this disease and the work the Cystic Fibrosis Foundation is doing to find a cure.”

Teens asked members of Congress to support accredited CF care centers, which provide access to specialized CF care, and to protect funding for the National Institutes of Health and the Food and Drug Administration.

As a result of their efforts, Reps. Barbara Lee (D-CA), Paul Tonko (D-NY) and Bruce Braley (D-IA) joined the Congressional Cystic Fibrosis Caucus, chaired by Reps. Edward Markey (D-MA) and Tom Marino (R-PA).

Reps. Steve Israel (D-NY), Rodney Frelinghuysen (R-NJ), Joe Heck (R-NV), Jim Langevin (D-RI) and Lynn Westmoreland (R-GA) tweeted about their meetings with the teens, linking to pictures they took with the young adults and their families. Rep. Joe Garcia (D-FL) promised to read a statement about CF written by James Hodge and Carlos Santos, both 18 and of Boca Raton, Fla., on the floor of the House of Representatives.

Teen Advocacy Day was led by Carlos Santos, James Hodge, Camila Strassle and Eva Tarletsky, veterans of the Teen Advocacy Day program, who are interning with the Foundation’s Public Policy Department this summer.

Check out more photos from Teen Advocacy Day on the Foundation's Facebook page.

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