Issue 1
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| Welcome
| In This Issue: • Jim's Story | |||
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| Hi I’m Jim, I’m 42 years old and I have Cystic Fibrosis. I’m heading off to Japan next week for my annual skiing holiday! If you’d asked me as a teenager whether I’d be fit enough and healthy enough to be off skiing when I was 42, I would have avoided the question, but with a deep sense of ‘probably not!’ My CF journey is not unique, like everyone, I’ve taken various forms of medications all my life, and like all Cf-er’s I have spent my fair share of time hanging around hospitals.
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65 Roses Day this year is on Friday 28 May 2010! It is the national awareness day for Cystic Fibrosis (CF) in Australia and was named after the folklore story of a little boy who could not pronounce his sister's condition, Cystic Fibrosis, and instead called it "65 Roses". We are always looking for a keen helper or two! Go to the website to find our more.
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| The Australian Cystic Fibrosis Research Trust will fund four new projects in 2010. “Viral burden in infants with Cystic Fibrosis.” – Funded by the LJ Hooker CF Research Trust - $91,906 “Development of noval assay for the detection of clonal P. Aeruginosa in persons with CF.” – $68,950 “Trial of nebulised 0.0% vs 6% saline for people with cystic fibrosis.” – $95,723 CF-IDEA (Cystic Fibrosis – Insulin Deficiency, Early Action) – $49,459.50
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| Welcome to the first newsletter from CFA. 2009 was a very productive year for our major projects. Firstly, the data registry is making great strides. The release of the 2008/2009 Data Registry Report is imminent, and our ultimate goal is to report within 12 months of year-end. Statistics from these reports continue to indicate that we are making headway in the fight against Cystic Fibrosis.
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| An Amazing Voyage to Support CF In 2012, Ben Turner will be embarking on the adventure of a lifetime — a solo, unassisted and non-stop row across the Pacific Ocean! After 12,797 km | 7,952 miles and 260+ days at sea, I will become the first Australian and youngest person to row the Pacific... FAQ How do you bring fresh water with you for 9 months? Fresh water will come from a solar-powered electric water desalinator that can produce more than six gallons of fresh water per hour. If the main desalinator fails, I will have one handheld back up as well which will actually be connected to my rowing... |  | |||
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| Corporate Car up for grabs in the 2010 Great Escape! Looking for a different way to reward your staff or love the idea of doing a charity car rally? Why not hire our corporate car – we promise you’ll be hooked! The Great Escape is a friendly, laid back charity car rally. Kicking off in Echuca on 13 September it will travel a 10 day route, including a visit to beautiful Kangaroo Island, before making its way to the finish line in Bateman’s Bay on 23 September 2010. |
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| Timothy Kidd is a talented researcher and one of 12 students funded by the Australian CF Research Trust Fund. He is taking a moment out from his busy schedule to answer some of our questions. You started with a background in Microbiology/Biotechnology. Based on this background, were you always planning to be in the role you find yourself in? |
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| Did you know that Cystic Fibrosis Australia runs one of the most advanced CF data registries in the world? Data registries might sound boring, but they are an incredibly powerful tool in the fight against CF! They are used for identifying the most effective treatments for each patient through the process of discovering best practices. |
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| If you are interested in volunteering with CFA – please contact us today! We are looking for two volunteers who can assist us at our North Ryde office for the 65 Roses Day campaign. |  | |||
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| Support Cystic Fibrosis by building your own personal fundraising page called Hero Pages to raise money for Cystic Fibrosis. Instructions for creating a Hero Page can be found on the Everyday Hero website under the help section. Become a CF everyday hero today!
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