Claudia Werner
Executive Director
Cystic Fibrosis Foundation
North Florida Office
Mission
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and/or control cystic fibrosis and to improve the quality of life for those born with the disease. Cystic fibrosis is a disease that affects the areas of the body where mucus exists, which are lungs, the digestive system, reproductive organs and sinuses. In CF, the mucus is thick and sticky, causing increasingly serious lung infections and digestive issues. For many years, there was little that could be done to help patients with CF and they often passed away during childhood. As a result of years of CF research and drugs developed specifically for CF, the median age of those living with CF today is almost 38 years. Sadly, because the disease can vary greatly in severity, children continue to be lost to this disease, which is why the CF Foundation is so diligent in the search for a cure.
Serving Jacksonville
The Jacksonville office was established in 1996, although Nemours Children’s Clinic has been the home to the Cystic Fibrosis Foundation-funded CF Care Center for many years. The national organization was founded in 1955. I have been with CFF since 1998.
Those served
This office covers an area from Jacksonville to Pensacola and from the Florida state line down to Gainesville. In this area, there are several hundred CF patients (children and adults). The CF Care Center at Nemours treats children from south Georgia as well, although special events held in that area are directed out of Atlanta.
Biggest challenge
The continual need to raise awareness because so many people are still unaware of what cystic fibrosis is and what the Cystic Fibrosis Foundation actually does. This must take place before discussing the critical need for funding cystic fibrosis research.
Biggest satisfaction
It is very satisfying to know that during my time with the Cystic Fibrosis Foundation, the median age for those living with cystic fibrosis has risen almost 12 years. We are on the verge of being able to stop this disease in its tracks, with medicines that appear to be able to correct the defective gene that causes cystic fibrosis. Doing so could add decades to the lives of those born with cystic fibrosis.
Hometown
Farmington Township (now Farmington Hills), a suburb of Detroit, Mich.
Your job before the Cystic Fibrosis Foundation North Florida Office?
Sales with a local staffing agency.
First experience with community service
I was a Girl Scout growing up. After my twins were born in 1990, I spoke on behalf of the American Red Cross in Nashville, Tenn., for several years, regarding the importance of blood donation. That experience touched me in a way that was life-changing.
Upcoming events
Nov. 13: Sixty-Five Roses Golf & Tennis Tournament, Jacksonville Golf & Country Club.
Nov. 19: The Single Greatest Night in Jacksonville, Marriott Sawgrass Resort.
Contact information
733-3560
[email protected]