Teen fights for cystic fibrosis care, research

Published on Monday, 14 July 2014 17:26 - Written by Staff Reports

 

A Tyler teenager traveled to Washington, D.C., recently to advocate for drug research and health care for people with cystic fibrosis.

Blake Parrish, 17, joined more than 70 other teenagers from around the nation last month to encourage the nation’s elected officials to support drug research and development, and to protect access to high-quality, specialized care for people with cystic fibrosis, according to a Cystic Fibrosis Foundation news release.

The inherited fatal disease causes recurrent lung infections, lung damage and premature death.

Parrish participated in the Teen Advocacy Day on behalf of his sister, Maci Drewry, 12, who has the disease.

During the event, he met one-on-one with Texas senators and representatives to share his experiences and advocate for people with cystic fibrosis.

He and the other teenagers asked their Congressional representatives to increase funding for the National Institutes of Health and the Food and Drug Administration and to recognize the importance of affordable access to health care at centers accredited by the Cystic Fibrosis Foundation.

“I am thankful to have been a part of Teen Advocacy Day and to have had the opportunity to travel to Washington, D.C., to speak for Maci and other people with this terrible disease,” Parrish said. “It was exciting to meet my elected officials and help them understand what those with CF experience on a daily basis. I know firsthand why we need new medicines to treat cystic fibrosis and the importance of quality CF care, and I think it’s important our representatives in Washington understand, too.”

Maci did not attend the event because people with cystic fibrosis are advised to avoid being in close contact with other people with cystic fibrosis because of the potential risk for lung infections.

The Cystic Fibrosis Foundation, which sponsored the Teen Advocacy Day, is a nonprofit donor-supported organization dedicated to comprehensively fighting cystic fibrosis.