Capturing CF @capturingcf
I am living with cystic fibrosis (CF) and also married to someone with CF (who is a double lung transplant recipient). capturingcf.wordpress.com Sydney, New South Wales Joined May 2013-
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No parent should have to bury their child 💔 @VertexPharma @GregHuntMP how can you deny a life changing medication to Evie & 1300 others? #WeNeedOrkambi
No parent should have to bury their child 💔 @VertexPharma @GregHuntMP how can you deny a life changing medication to Evie & 1300 others? #WeNeedOrkambi
A Cystic Fibrosis miracle pill could save Sonia's daughter. @Lisa_Wilkinson spoke with the inspirational duo who are campaigning for help. #TheProjectTV
@theprojecttv @Lisa_Wilkinson Orkambi would add years to my sons life: and he deserves to live. Thank you so much for bringing our fight to the forefront and backing us, our hearts break as we wait for Orkambi ❤️ #orkambi #australia #orkambifortheo #cysticfibrosis @GregHuntMP
We've heard positive news from @GregHuntMP & @VertexPharma this week, but after 3 rejections & 2.5 yrs of negotiations, we need action not just words. Too many lives have already been lost #WeNeedOrkambi facebook.com/tennews/videos…
We want CF To stand for Cure Found- and Orkambi is the closest we’ve come. Let’s get Orkambi to the Aussies living with #cysticfibrosis ASAP, Australia #australia #cf #orkambi #share #retweet #cfa #fucf #vertex @VertexPharma @GregHuntMP
Today youve been tweeting about organ donation @GregHuntMP An extremely worthy cause Although it leaves me a little perplexed because if you were that passionate about saving lives youd fund #orkambi Transplants r a last resort not the answer #WeNeedOrkambi #EarlyAccessSavesLives
This image brings it home to me My daughter is top line 2nd on right It’s her 21st in a few weeks time One does not simply get over CF It’s compelling evidence but it’s so hard for me to see #WeNeedOrkambi @GregHuntMP @HumanHeadline @TurnbullMalcolm
@GregHuntMP - The Government appointed Pharmaceutical Benefits Advisory Committee (PBAC) has failed us. Your intervention is now required to give us access to Orkambi #WeNeedOrkambi
This is our daily life @GregHuntMP @TurnbullMalcolm @VertexPharma Can't you all just come to an agreement and let us have #ORKAMBI here in Australia! I'd love to see my child live without struggling everyday! #CysticFibrosis #WeNeedOrkambi
This is our daily life @GregHuntMP @TurnbullMalcolm @VertexPharma Can't you all just come to an agreement and let us have #ORKAMBI here in Australia! I'd love to see my child live without struggling everyday! #CysticFibrosis #WeNeedOrkambi
CF patients continue #FallThroughTheCracks of our system @healthgovau Urgent attention required! #WeNeedOrkambi
CF patients continue #FallThroughTheCracks of our system @healthgovau Urgent attention required! #WeNeedOrkambi
How much more evidence do we need @healthgovau ? #WeNeedOrkambi
How much more evidence do we need @healthgovau ? #WeNeedOrkambi
I think that this is unacceptable! What a terribly cruel situation for 1000 Australians Years of life and possibilities stripped from these people because their lives aren't worth it Pay more than 10%! @healthgovau #WeNeedOrkambi
@CF_Foundation Will people in countries outside the US be able to access these though? Two years later and we still don't have #Orkambi in Australia
CF life expectancy is 47 in the US but 37 in Australia. Main difference is access to meds like #Orkambi @GregHuntMP facebook.com/WeNeedOrkambi/…
CF life expectancy in Oz is 10 yrs behind that in the US They have access to meds #WeNeedOrkambi @GregHuntMP @CFAware @strawfie @LiberalAus
A ten year difference in CF life expectancy between the US and Aus. Not acceptable. #WeNeedOrkambi @GregHuntMP facebook.com/WeNeedOrkambi/… …
Look at the consequences of Australian's with CF being denied access to lifesaving meds like #Orkambi @HumanHeadline facebook.com/WeNeedOrkambi/…
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my CF Hero 💙 @myCFHero
1K Followers 2K Following Mother to a 9 year old girl, with the life limiting condition #CysticFibrosis. Fighting for access to medicines #Orkambi #Kaftrio (#Trikafta) #DoTheRightThing
#Lifesavingdrugs4cf #... @sade_39
441 Followers 400 Following We Need Everyone's Help In Our Campaign For Access To ALL Precision Medicines For People With CF In The UK. Please join our FB group. 👇🏾
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