What is CF Orlando?
CF Orlando was created by parents of children with cystic fibrosis. They felt isolated by the disease and the
fact that they had no way to reach out and meet other parents dealing with the same issues. CF Orlando is a way for families
living with CF to connect with each other: communicate their hopes, fears, concerns and questions in a safe, loving environment.
When you log on to CF Orlando, you will know that the pictures you see and the stories you read are from your neighbors, those
living in Central Florida.
What is Cystic Fibrosis?
Cystic fibrosis is a genetic
chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. A defective
gene and its protein cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to
attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children
and adults with CF. Currently, the average life expectancy of a patient living with CF is 36.8 years.
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The next CF Parents' Night Out is scheduled for 7:00
pm on Tuesday, June 10, 2008 at the The Monkey Bar in downtown Orlando. The address is 26 Wall Street, Orlando. We hope
you can join us!!!
If you can't make our CF Parents' Night Out,
you can always catch the next one. We are now holding them quarterly, so the following Night Out will be sometime in September.
Please check out pictures from our February Night
Out on our Family Events page in the Photo Gallery. If you have any questions or suggestions about CF Parents' Night Out,
please e-mail kathryn@cforlando.org.
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Gillian was diagnosed at birth with
CF. She's 6 years old now and she's staying in pretty good health. Gillian does her Vest every day and
breathing treatments as needed. She takes many enzymes and other medications too. Gillian is the star of "Gillian's
Gems" . This is our team name for the Great Strides walk-a-thon. This will be our 7th year participating.
We will rotate our photos to feature one CF family at
a time. Please send us a photo of your child(ren) and a few sentences bragging about him or her! Visit the Contact
Us page for contact information.
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