Teens to call upon Congress to fund drug research for rare diseases

Jun 22 2010

Kids From 14 States Make Case for Drug Funding and Improved Care for Fatal Disease

Teens from across the United States whose siblings have cystic fibrosis will press their elected officials in Washington, D.C., June 24, to fund drug research and increase access to clinical trials for those with rare diseases.

Their goal is to speed the development of new drugs for people who need them most.

The teens, ranging in age from 13 to 17 years, will meet one-on-one with elected representatives from their individual states. Fourteen states and 23 cities will be represented during the event – Teen Advocacy Day – sponsored by the Cystic Fibrosis Foundation.

Cystic fibrosis is a rare genetic disease that causes recurrent lung infections and premature death. The siblings will make the trip to Washington on behalf of their brothers and sisters, because people with CF cannot socialize in proximity to each other without risking life-threatening germ transmission.

WHAT:  Teens from 14 states will meet with their senators and representatives to press for help for their siblings with cystic fibrosis.

WHEN: Thursday, June 24, 2010

WHERE: Capitol Hill

STATES REPRESENTED: California, Florida, Hawaii, Illinois, Indiana, Kansas, Massachusetts, Michigan, Minnesota, Missouri, North Carolina, New Jersey, Tennessee, Virginia.