Kids From 14 States Make Case for Drug Funding and Improved Care for Fatal Disease
BETHESDA, Md., June 21 /PRNewswire-USNewswire/ -- 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.
About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. For more information, please visit www.cff.org.
SOURCE Cystic Fibrosis Foundation