campaigning 4 ALL fighting this hideous disease #CF 2 have the best Precision meds #LifeSavingDrugs4ALL on the NHS #STOPTHECLOCK #WeHaveKaftrio #Now4thelast10%
United Kingdom
Joined April 2018
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- Following681
- Followers460
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Teresa #kaftrio retweeted
Love this💛
#cysticfibrosis
@VertexPharma @blakeydark @DavidRamCFT @cftrust
Thanks @ChrisMRiches & @Daily_Express for all you continue to do for the CF community
Your commitment is unquestionable & we are lucky we had you help in the fight for #lifesaving #kaftrio on the #NHS
What a joy to not only write this in @Daily_Express but also discuss it with @EamonnHolmes and @IsabelWebster_ on @GBNEWS Breakast Show today. These smiling #cysticfibrosis sufferers’ faces are so magical and make me want to sob!!!! @cftrust express.co.uk/news/uk/159088…
Teresa #kaftrio retweeted
Great news #Australia🇦🇺
@VertexPharma #kaftrio #trikafta really is the game changer we all hoped for
Great to see another country funding this #lifesaving #cysticfibrosis #precisionmedecine
It’s the future but 10% of pwCF are waiting for their turn
#loveScience #cf @cftrust
Teresa #kaftrio retweeted
Today I reached a major milestone of raising £300,000.00 for @cftrust on my 60th Birthday. So looking forward to running another @LondonMarathon this Sunday People living with CF have got such a bright future ahead because of life saving drugs. Thank you everyone for your support – at City of London, London
Teresa #kaftrio retweeted
Come on @LloydsPharmacy I can’t believe this is still happening! We’ve had people in our community having to miss days of their #Kaftrio having fought for years for it it’s not fair for them to hv to stop it coz u can’t deliver it in time!
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Teresa #kaftrio retweeted
We will continue to be extra careful
We have to wear the better quality 😷 so we can be safe from the #COVIDIOTS who don’t care about those in our communities that are more vulnerable
Cheers…not Boris🙄
Got my new #cysticfibrosis #65roses mask
Love it
@CambridgeMaskCo
Teresa #kaftrio retweeted
👏🏻👏🏻👏🏻
ThankYou @Daily_Express @ChrisMRiches for another great story. Keeping #cysticfibrosis in the headlines will benefit the future for everyone with #CF
Awareness is so important @cftrust @strawfie @GreatStrides65 @Alidilly @MotherhoodvsCF @BrynSeiriol @EmmaKCorr @Elizabe46045399
Teresa #kaftrio retweeted
#cf is a degenerative disease there’ll always be need 4 best drug. In Devolved nations NO criteria except having the correct genes, in Eng a case has to be made for each person! They hv CF there’s yr reason! Simon Stevens said rest Uk cld tag on our deal.. they hv better deal!
Thanks @Daily_Express @ChrisMRiches
But why did Hayden have to deteriorate to access #kaftrio when we’re told off label for some CF🧬CAN happen if there’s clinical need
Isn’t there always “Clinical Need” for a superior drug? Like in Scotland😡
@cftrust @NHSEngland😡
Teresa #kaftrio retweeted
Thanks @Daily_Express @ChrisMRiches
But why did Hayden have to deteriorate to access #kaftrio when we’re told off label for some CF🧬CAN happen if there’s clinical need
Isn’t there always “Clinical Need” for a superior drug? Like in Scotland😡
@cftrust @NHSEngland😡
Teresa #kaftrio retweeted
Pls RT for the 10% who still need their breakthrough - and of course to help find a cure for all, because modulators are amazing but they are not a cure. #cysticfibrosis
#Liam300K #GoLiam #CFTrust #Health #charityUK #charity #CFAwareness @liammchugh1961
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Teresa #kaftrio retweeted
Simon Stevens was clear in his statement re following FDA 4 Kaftrio. Rest of UK has, but England hasn’t. NHSE now saying u need to show decline is NOT Equality. Everyone who is not receiving Kaftrio (triple therapy) will be declining or hv the potential to rapidly decline.
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Teresa #kaftrio retweeted
Congratulations to our friends in #PKU community wonderful news for under 18’s, shocked to hear over 18’s hv been denied. The CF community are behind you and ready to help however we can, you have @ChrisMRiches & @Daily_Express on the case though and we know they won’t give up!
Teresa #kaftrio retweeted
I just can’t think about needing to stay alive with dialysis for years so I really need your help. I’d love a new lease of life I’m so excited about the future on #kaftrio.I desperately need a kidney. Please like & share💞#cysticfibrosis #altruism #kidney #transplant #obloodtype
Teresa #kaftrio retweeted
Exactly this .@matthancock
This isn’t what you would have wanted I’m sure
These finer details do matter
Please intervene
Thanks
#Kaftrio
@ChrisMRiches @Jeremy_Hunt @CommonsHealth @cftrust @DavidRamCFT @MrslloydDenise @Marion_Super @CFQuestForCure @mc_maggs @blakeydark @pmrleahy
Teresa #kaftrio retweeted
Nothing new here though we know this. I only have one question. If @NHSEngland got such a great deal, WHY don’t English Patients have Same access as Scotland, NI and Wales already? Thank you.
Teresa #kaftrio retweeted
😡this still doesn’t offer equality of access to all parts of the #uk .@cftrust
We didn’t fight for 4 years to still leave behind a sizeable part of our #cysticfibrosis community in #england
STILL NOT good enough for CFers in🏴
#Kaftrio
@blakeydark @ChrisMRiches @Marion_Super
Teresa #kaftrio retweeted
Totally agree. If this is the case and clinicians can prescribe, then please tell them how. They are respiratory consultants who’re actually up to their eyes in covid. Please make it clear and easy. Tell them how now. They’ve actually a WhatsApp group so it won’t be that hard!!
Teresa #kaftrio retweeted
@DonnellyStephen I have #cysticfibrosis and in kidney failure currently listed for a kidney transplant why do I have to wait until July to get vaccine? Why are there over 1 million people ahead of #cf #transplant patients & over vulnerable patients?