#UK CF campaigner Sharon
@CFno1LeftBehind
Followers
1K
Following
42K
Media
3K
Statuses
33K
🇺🇦#Ukraine 🇬🇧#UK 💊 #Kaftrio 💙 #NHS #cysticFibrosis #genetherapy 🧬 Let’s find a “cure” for CF 💛 #noOneLeftBehind 💛💛@cftrust💛supporter
Surrey, England, UK, Europe.
Joined October 2010
.@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
.@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
1
7
16
Finally, I had done everything feasibly possible ie I emailed you full details & WhatsApp you full details too I have replied & acknowledgment from you as proof so pls get this sorted Thank you Order W25099980 Pls follow so you can dm me or you can get my details from order no
0
0
0
As it’s a @TheRangeUK #marketplace order from @rinkithome it needed to be cancelled to avoid hefty return changes as postage wld be required?? I should NOT have to pay this as I cancelled immediately You were too quick to deliver & too slow to process cancellation NOT MY FAULT
8
1
1
And to make matters worse. Your WhatsApp agent told me to give it back to EVRI driver. But I wasn’t at home and I had several evri deliveries and my husband didn’t know which one
1
0
0
Hello @TheRangeUK I order something and then cancelled immediately as I realised I ordered the wrong thing I sent you an email and WhatsApp stressing that this needs to be cancelled but your supplier delivered before I had the chance to completed cancellation Pls help
9
1
1
See video below. This is such a bad system. Why doesn’t the data save so I don’t have to re submit everything from scratch Can I email stuff to you or can mail it I hope this isn’t a deliberate tactic to make me go away because I won’t
0
0
0
Please HELP me @Ryanair Why is it seemingly IMPOSSIBLE to submit my delayed baggage claim form on your website Spent 8 hrs+ today at my mac waiting 4 system & docs to upload (all correct format) & then it bombs out.& I loose everything😡 Are you trying to put me off trying🙄
Please RT so Mr Michael O Leary from @Ryanair or someone with authority in Ryanair gets this message I’m very disappointed that my bag wirh all my party clothes and makeup etc never arrived in Dublin today for my Special Birthday Bash this evening @HerbertParkH
#60thBirthday🥂
1
0
0
Please RT so Mr Michael O Leary from @Ryanair or someone with authority in Ryanair gets this message I’m very disappointed that my bag wirh all my party clothes and makeup etc never arrived in Dublin today for my Special Birthday Bash this evening @HerbertParkH
#60thBirthday🥂
0
0
3
NHS hope as new miracle drug greatly reduces some cystic fibrosis symptoms
express.co.uk
Genetic condition CF had no treatments on the NHS before 2019 and a Daily Express campaign - now a miracle pill could vastly reduce worst some of the symptoms.
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
1
2
5
NHS hope as new miracle drug greatly reduces some cystic fibrosis symptoms
express.co.uk
Genetic condition CF had no treatments on the NHS before 2019 and a Daily Express campaign - now a miracle pill could vastly reduce worst some of the symptoms.
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
1
2
5
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
1
4
9
Halal and Kosher should be banned. End of.
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
278
756
7K
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
1
0
0
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
https://t.co/nSTmEdl2TG
0
0
2
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
Researchers at Imperial College London are leading human trials for the innovative treatment
0
0
1
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
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
0
2
5
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
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
0
2
5
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
A Phase 1b trial assessing the safety of inhaled therapy RCT2100 in cystic fibrosis patients has dosed the first participant in the U.S.
0
1
2
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
A Phase 1b trial assessing the safety of inhaled therapy RCT2100 in cystic fibrosis patients has dosed the first participant in the U.S.
0
1
2
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
https://t.co/6mMeizHvs9
#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: https://t.co/eEh8Afdnip
0
1
4
#Breaking: The U.S. FDA has approved our newest treatment for cystic fibrosis. Learn more: https://t.co/FPTRktdjYb
4
15
47