Teens Lobby Congress to Raise Awareness of Cystic Fibrosis
Kids from 20 States Make Case for Drug Funding and Access to Care for Fatal Disease
June 22, 2011
(Bethesda, Md.) – Teens from across the United States whose siblings, cousins and other loved ones have cystic fibrosis will urge elected officials in Washington, D.C., to fund government agencies that are vital to drug research and development. They will also press Congress to protect health coverage for people with cystic fibrosis, a rare and fatal genetic disease.
These efforts are part of Teen Advocacy Day, taking place on June 23. It is sponsored by the Cystic Fibrosis Foundation.
The teens, ranging in age from 12 to 18 years, will meet one-on-one with elected representatives from their individual states. Twenty states and 41 cities will be represented during the event.
The teens are making the trip to Washington on behalf of their loved ones because people with CF cannot socialize in close proximity to one other without risking life-threatening germ transmission.
About 30,000 people in the U.S. and 70,000 people worldwide have CF. Ten million Americans are symptomless carriers of a defective CF gene.
WHAT: Teens from 20 states will meet with their senators and representatives to press for help on behalf of their friends and relatives with cystic fibrosis.
WHEN: Thursday, June 23, 2011
WHERE: Capitol Hill
STATES REPRESENTED: Arizona, California, Connecticut, Florida, Illinois, Kansas, Kentucky, Maryland, Massachusetts, Michigan, North Carolina, New Jersey, Nevada, New York, Oklahoma, Pennsylvania, South Carolina, Tennessee, Virginia and Wisconsin.
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. The CF Foundation is a donor-supported nonprofit organization. For more information, visit www.cff.org.
- Laurie Fink, National Director of Media Relations: 301-841-2602