May is the month for Cystic Fibrosis, with 65 Roses Day being the main initiative, the month of May allow's us to create a national fundraising initiative. It raises awareness and essential funds to extend and improve the quality of life for people with cystic fibrosis. (The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses." Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease.) This year I am excited to be holding my second fundraiser for the Cure4CF Foundation. As an ambassador for the foundation, I am dedicated to helping raise much needed funds to support the research in finding a cure for CF. For more info click here As the planning is currently underway, I want to make sure you don't miss out! Tickets will be limited. So be sure to Sign Up below so you do not miss out on the event information and the official ticket release. It will sell out!
Cystic Fibrosis is the most common life-threatening recessive genetic condition affecting Australian children and young adults today.
Cystic Fibrosis (CF) primarily affects the lungs and digestive system. The CF gene causes normal mucus to change into a thick, sticky substance, clogging the tiny air passages in the lungs and trapping bacteria. Repeated infections and blockages cause irreversible lung damage and, ultimately, death. People who have CF must have daily intensive chest therapy to combat the build up of mucus in the lungs. Most must also take digestive enzyme replacement tablets with food and drink to aid digestion. This can mean taking up to 40 tablets per day.
Here are some quick facts about CF:
- Every 4 days a baby is born with CF - There are more than 1 million carriers of the CF gene in Australia - 1 in 25 Australian's are a carrier of the CF gene - There are over 3,000 people living with CF in Australia - CF is an inherited condition. - For a child to be born with CF both parents must be genetic carriers - Management and treatment of CF is lifelong, ongoing and relentless - People with CF are not encouraged to socialise with each other due to the risk of cross-infection - Due to advancements the average life expectancy of someone living with CF is now 37, but there are still many children who do not reach adulthood - Life expectancy is 37 and as yet, there is no cure