🇺🇦#Ukraine 🇬🇧#UK 💊 #Kaftrio 💙 #NHS #cysticFibrosis #genetherapy 🧬 Let’s find a “cure” for CF 💛 #noOneLeftBehind 💛💛@cftrust💛supporter
Joined October 2010
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- Following 1,323
- Followers 1,259
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Pinned Tweet
3 Jul 2020
.@MattHancock Thanks for helping 👏🏻👏🏻
@ChrisMRiches #ourCFSuperHero🤩
@jess_cranfield can’t wait to start #kaftrio from @NHSEngland & @VertexPharma
She can now live with CF not die from it
She’ll be able to breathe for #1000years @MarcCotterill
Next the cure & 10% @cftrust
13 Dec 2019
.@cftrust Look @MattHancock says he’s going to help us fight for #TrikaftaNext
We hope you can help We need to meet with @VertexPharma to get them to agree to engage with @NHSEngland for an interim/managed access deal in May 2020 when licensed by EMA @ChrisMRiches @NickMedhurst
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Nice to see this article @jilli09 👍🏻😊
30 Dec 2025
So grateful to @SimonHarrisTD for ensuring we got the best deal. @VertexPharma modulators have been life changing
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#UK CF campaigner Sharon retweeted
17 Mar 2025
NHS hope as new miracle drug greatly reduces some cystic fibrosis symptoms express.co.uk/news/uk/202765…
17 Mar 2025
A fantastic headline for #StPatricksDay
Let’s hope for a bit of Irish luck ☘️ that this latest @VertexPharma #cysticfibrosis drug gets approved by @NICEComms & is available on @NHSuk
It’s still NOT yet that illusive cure but certainly is an even better CF drug🤞🏻
@ChrisMRiches
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17 Mar 2025
A fantastic headline for #StPatricksDay
Let’s hope for a bit of Irish luck ☘️ that this latest @VertexPharma #cysticfibrosis drug gets approved by @NICEComms & is available on @NHSuk
It’s still NOT yet that illusive cure but certainly is an even better CF drug🤞🏻
@ChrisMRiches
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#UK CF campaigner Sharon retweeted
9 Mar 2025
Halal and Kosher should be banned. End of.
6 Mar 2025
BREAKING - Food Standards Agency officials took no action at huge no-stun Halal slaughterhouse, despite witnessing slaughtermen playing wolf howls to dying sheep and deliberately breaking rules to inflict immense pain, fear and distress | The Independent independent.co.uk/news/uk/ho…
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9 Mar 2025
Hello @SkyHelpTeam
I was looking forward to my SKY VIP rewards movie night in lbut despite following your instructions on my Sky app, my Sky Q box wouldn’t allow me to watch this movie assuming I didn’t have enough credit on sky store 🤷♀️You said it was a FREE gift🎁🎥😡
Dm sent
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9 Mar 2025
Great news👋🏻
Progress on the next stage of modulator #CysticFibrosis drugs in the UK
Let’s hope it lives up to its expectations & that it will be a superior drug for pwCF🤞🏻
A once a day pill will also help!
@cftrust
@jess_cranfield
@ChrisMRiches
investors.vrtx.com/news-rele…
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21 Feb 2025
Amazing to think this project started 24 years ago @jess_cranfield 😜🤩
A nice birthday present 💝 🧬
Novel inhalable gene therapy trialled for people with cystic fibrosis imperial.ac.uk/news/261319/n…
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#UK CF campaigner Sharon retweeted
15 Feb 2025
This is so unprofessional @haart_uk
My beautiful daughter deserves to live in safe living conditions without all this mould 🦠 which is life threatening for someone with CF 🧬
You have a responsibility to sort this out
Shame on you!
@ChrisMRiches @cftrust
@Daily_Express
15 Feb 2025
As a person living with #cysticfibrosis it’s totally unacceptable that @haart_uk have left me living in horrific conditions despite trying to rectify for months. It’s putting my life and health as well as my housemates health at risk. it’s absolutely unacceptable
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#UK CF campaigner Sharon retweeted
14 Jan 2025
Great news for the 10% of pwCF who can’t take #kaftrio
@jess_cranfield & possibly everyone if the 🧬technology works
A Phase 1b trial assessing the safety of inhaled therapy RCT2100 in cystic fibrosis patients has dosed the first participant in the U.S. cysticfibrosisnewstoday.com/…
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#UK CF campaigner Sharon retweeted
20 Dec 2024
Wow….In the USA, a new @VertexPharma triple, once daily💊
“(vanzacaftor/tezacaftor/deutivacaftor), a once-daily next-in-class triple combination #cysticfibrosis ”
Interesting news for 🇺🇸 patients & hopefully in Europe soon…
@cftrust @ChrisMRiches
news.vrtx.com/news-releases/…
20 Dec 2024
#Breaking: The U.S. FDA approves a label extension for #CysticFibrosis. We are excited to make this treatment available to more eligible patients. Learn more: vrtx.com/
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#UK CF campaigner Sharon retweeted
20 Dec 2024
#Breaking: The U.S. FDA has approved our newest treatment for cystic fibrosis. Learn more: news.vrtx.com/press-releases
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20 Dec 2024
20 Dec 2024
Read the news story about the approval of Alyftrek, including the rare mutations of the CFTR gene that have been approved for Alyftrek. on.cff.org/4grYd1C
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20 Dec 2024
More info on additional #Cysticfibrosis gene mutations 🧬 that can benefit from @VertexPharma new triple therapy in the USA
@CF_Foundation details here ⬇️
FDA Approves New, Once-a-Day CFTR Modulator for People With CF cff.org/news/2024-12/fda-app…
UK next 🙏🏻
@ChrisMRiches @cftrust
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#UK CF campaigner Sharon retweeted
17 Dec 2024
Worst thing ever getting sky broadband @SkyHelpTeam
I wish I’d stayed with EE
I’m a VIP SkyQ customer for last 18 years, & was convinced by your @SkyUK customerservice to get Sky BB
I’m so disappointed & then I find out YOU DELIBERATELY REDUCE FUNCTIONALITY OF ROUTER😡 WHY?🤔
15 Dec 2024
ℹ We are aware some of our customers may be experiencing issues with their Broadband service, we’re sorry about this, engineers are working hard to fix the problem and we hope to have an update for you soon.
We're sorry for any inconvenience this may cause.
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13 Dec 2024
‼️This is an URGENT important issue that many people are stunned & shocked about ‼️
#Cysticfibrosis adults SHOULD NOT have to pay prescription charges for their chronic lifelong serious & multi organ medical condition!!
@Rebecca_SPaul
Pls join your colleagues to fight this🙏🏻
12 Dec 2024
Last week, our team attended the Prescription Charges Coalition Parliamentary drop-in event, aiming to engage MPs in discussions about the impact of paying for prescriptions on people with long-term conditions in England.
Read more on our website.
➡️ ow.ly/VskB50UpSJJ
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