By Nicole Tinkham
My neighbor and close family friend just recently lost her 25 year old son to cystic fibrosis, a chronic disease that affects the lungs and digestive system. Cystic fibrosis is caused by a defective gene and its protein product that causes the body to produce thick mucus which clogs the lungs and obstructs the pancreas. Medical advancements have extended life in children and adults and today those with CF can expect to possibly live into their 30’s, 40’s, and beyond. This is a great leap from what it was in the past which is why research needs to continue on this disease to find a cure.
The Cystic Fibrosis Foundation funds more CF research than any other organization. This nonprofit donor-supported organization focuses on the development of drugs to fight the disease and improve the quality of life for those with CF, with the ultimate goal of finding a cure. So far, the Cystic Fibrosis Foundation has come a long way with their goals in extending life expectancy, discovery of the defective gene that causes the disease (by CF Foundation-supported scientists), playing an important role in the development of therapies that are now regular treatment regimens, and supporting research that will treat the cause of the disease. Still, there is a lot to do in order to reach the ultimate goal, but there are ways that you can help.
How to help
• Donate: “Money buys science and science buys life”
• Volunteer: There are many ways to use your skills to help out.
• Attend special events: You can find various events from fishing tournaments to golf tournaments.
• Participate in clinical trials to discover new treatments and a potential cure.
• Raise awareness
The Cystic Fibrosis Foundation has more than 75 chapters across the country. You can find a chapter near you by viewing this map.
Florida Chapter – Southwest Florida Office – Tampa
5100 West Kennedy Blvd.
Tampa, FL 33609
p: (813) 374-9041
Contact: Executive Director: Pat Warbritton
Cystic Fibrosis may not be something you think about too often, but to others it’s all they can think about which is why I chose this organization to feature for the month of March. Before my neighbor’s son went into the hospital for the last time, I hardly knew anything about the disease but now I know how serious it is and how much it affects those with the disease as well as family and friends close to them. If you aren’t in a position to help out, that’s fine. The important thing to take away from this blog is knowledge about cystic fibrosis.