Well, I usually don’t go into much detail about the NEETS charities, but this upcoming one hits a little towards home…the CF Foundation.
When I started racing back in ’03, I contacted a guy named Bartley to see if he would help support the cause I was racing for, the Cystic Fibrosis Foundation. During ’03 & ’04, all our sponsorship money and race winnings were donated to the foundation, which accumulated to almost $3K.
The disease itself is complicated in some sorts, but it all started when my neice, Camellia, was in the hospital for a few weeks. With this disease, it’s basically mandatory for a yearly ‘tune-up’.
First, I want to thank Billy for choosing this charity for the Firecracker Smacker. Unlike many charities, less than 20% of the funds generated are used for ‘official use’, which is employee pay, insurance, etc.
Here’s the gist of CF:
·Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the United States. A defective gene causes the body to produce an abnormally thick, sticky, mucous that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food. The mucous also can block the bile duct in the liver, eventually causing permanent liver damage in approximately six percent of people with CF.
·More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene. An individual must inherit two defective CF genes—one from each parent—to have CF. Each time two carriers conceive, there is a 25 percent chance that their child will have CF; a 50 percent chance that the child will be a carrier of the CF gene; and a 25 percent chance that the child will be a non-carrier. (before my wife & I planned on having our daughter Rose, we were both tested. Jeralyn, my wife, carried the gene & I did not, which made it OK)
·CF occurs in approximately one of every 3,500 live births. About 1,000 new cases of CF are diagnosed each year. More than 80 percent of patients are diagnosed by age three; however, nearly 10 percent of newly diagnosed cases are age 18 or older.
·According to the CF Foundation's National Patient Registry, the median age of survival for a person with CF is in the mid-30s. As more advances have been made in the treatment of CF, the number of adults with CF has steadily grown. Today, nearly 40 percent of the CF population is age 18 and older. Adults, however, may experience additional health challenges including CF-related diabetes and osteoporosis. CF also can cause reproductive problems - more than 95 percent of men with CF are sterile. But, with new technologies, some are becoming fathers. Although many women with CF are able to conceive, limited lung function and other health factors may make it difficult to carry a child to term.
Although she’s officially a ‘teenager’, I will see if Camellia can attend the next NEETS HSCS enduro. I think it’ll be a great thing for her!
All information was obtained from www.cff.org. Also, the local chapter in our are is in Whitehall, PA. The contact name is Linda Capozello.
Our website is http://tylerjett.denoria.com It hasn’t been updated in some time, but the basics are on there. LOL, don't worry, not trying to sell anything, but there's a million things to be thankful for. (PS...don't mind the guestbook is full of JUNK).
