Cystic Fibrosis
@CF_65roses
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are you a carrier? help raise awareness and hopefully find a cure
Melbourne, Victoria
Joined April 2011
Our little boy has RSV, flu & adenovirus-He’s already on antibiotics. Waiting to see if we get tamiflu or if no point as had it a few days already\CF team say normally in hospitalwith rsv so he is coping amazingly our little fighter @cftrust @CF_Foundation @CF_65roses #superhero
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❤️ @CF_65roses Mum's push for cystic fibrosis treatment to be subsidised for children under 12
abc.net.au
Four-year-old Mila's day is full of intense therapy and medication, as she has cystic fibrosis. A new medication would vastly improve her quality of life in the near future, but it's only subsidised...
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As the crazy search for All Ireland tickets continues, I'm shamelessly asking anyone who might know of 2 going a-begging I'd be so grateful 🙈🙏 I've a @Kerry_Official -mad lady here talking as if she's already going, so any help would be so very much appreciated 🙏🤞🙏💚💛
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CF Awareness Month may be coming to a close, but our work isn’t finished until CF stands for Cure Found. How do you plan on raising #CFAwareness all year long?
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G8t to be with @CFAustralia’s Nettie Burke discussing the Morrison Government’s $65 million investment to establish the first dedicated Cystic Fibrosis Specialist Unit in NSW.
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@ContinentChaser @CF_Foundation @cftrust @CF_Connection @CFAustralia @CFCanada @CFAwareness @KnowCF @CFAware @cf_ireland @CureToLive @CysticLife @CF_65roses @CF_Peel @cf_care I have read the blog about planning your own funeral and I'm going to share it with my twins. Right now, they are in fast forward mode (as any 23 yrs olds) would be with CF. They are trying to experience what they can while they can. It breaks my ♥️ I can't help financially.
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Who is excited to see 5 feet apart? #cfwarriors #fivefeetapartmovie
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A year tomorrow since I lost something that can never be replaced. A year on I'm still broken and lost give people with Cf and breathing problems.the medication and treatment to help live longer and healthier lives. Love you Elly Welly love silly Daddy Waddy
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Merry Christmas, happy holidays to everyone. Can’t think of a perfect gift? A donation to your local CF foundation will make a great gift :)
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Cannot believe we got the phone call from RCH to say Orkambi was ready to be picked up!!!!! @GregHuntMP thank you so much and @Nettie486 thank you so so much as well. 🌹🌹🌹🌹🌹🌹🌹
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Watch my latest video about the beginning of my Orkambi journey :) @OrkambiNow @orkambi @OrkambiNews @CF_65roses @cysticfibrosis
@CFNewsAustralia @GregHuntMP @VertexPharma @CFCanada @cflounge #cysticfibrosis #cf #orkambi #cfmummy
https://t.co/kDYnpfb8yl
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To all the CFers out there! #cysticfibrosis #travel
https://t.co/MI6oF9fbqV
#orkambinow #FelizMiercoles @cftrust @saltycysters @CF_65roses @cf_ireland @CureToLive #cureCF
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If you’ve got #cysticfibrosis or you know someone with CF you should read the @cftrust registry report. Centre by centre info. Important work.
The new UK CF Registry Annual Data Report is out! *Thank you* to people with cystic fibrosis, their families, and CF clinical teams across the UK for making these insights possible for over a decade! @HQIP @AMRC @CFAware @Patient_Data
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ONLY 5 DAYS TO GO! 🐧❄️🐧 Have you bought your raffle ticket yet for a chance to see Antarctica? With only 250 tickets on sale, you'll never have a better chance to win such an amazing prize. Thanks to the very generous folks at Antarctica...
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My #news clip on #trisha2taylor #TAG @taylorswift and @taylornation I NEED her to see this ♡ #corywithnoE #taylorswift #cysticfibrosis #share #reproom #reputationtour #reproomdetroit #swifties #reptourdetroit #radio #detroit #michgan #dream #wish #CamilaCabello #charliexcxc
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https://t.co/go8vtitcuw All people with CF will also be aware of the increased risk of sunburn on this drug & having to avoid taking dairy products within a couple of hours of taking it makes for another headache Perhaps access to #Orkambi will reduce the need to take such drugs?
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No one should face CF alone. Kate's survival is a gift. The birth of Molly is a miracle. All the work we do with families, providing services and equipment is only possible with your generous support. Let's make a difference...
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Happy Birthday to my special little girl. 8 years old today. How times fly.....absolute inspiration with all you have been through and a role model for your younger brother on how to fight Cystic Fibrosis. 🌹🌹❤️❤️ #WeNeedOrkambi #OrkambiNow
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