#UK CF campaigner Sharon

🇺🇦#Ukraine 🇬🇧#UK 💊 #Kaftrio 💙 #NHS #cysticFibrosis #genetherapy 🧬 Let’s find a “cure” for CF 💛 #noOneLeftBehind 💛💛@cftrust💛supporter

[#UK CF campaigner Sharon @CFno1LeftBehind]

.@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

[#UK CF campaigner Sharon @CFno1LeftBehind]

.@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

[#UK CF campaigner Sharon @CFno1LeftBehind]

Nice to see this article @jilli09 👍🏻😊

[Jillian McNulty @jilli09]

So grateful to @SimonHarrisTD for ensuring we got the best deal. @VertexPharma modulators have been life changing

[#UK CF campaigner Sharon @CFno1LeftBehind]

@GreatStrides65 @kyliem @TheRangeUK Yes and there were 3 others too on my tread last night. @X are a terrible organisation these days I avoid if at all possible 🙄🤦🏼‍♀️

[#UK CF campaigner Sharon @CFno1LeftBehind]

@GreatStrides65 @TheRanges_UK ThankYou.

[#UK CF campaigner Sharon @CFno1LeftBehind]

@Ryanair So typical of @Ryanair No🙄🤦🏼‍♀️😬🤔

[#UK CF campaigner Sharon @CFno1LeftBehind]

NHS hope as new miracle drug greatly reduces some cystic fibrosis symptoms https://t.co/XjfjHYJPKn

[#UK CF campaigner Sharon @CFno1LeftBehind]

NHS hope as new miracle drug greatly reduces some cystic fibrosis symptoms https://t.co/XjfjHYJPKn

[#UK CF campaigner Sharon @CFno1LeftBehind]

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

[#UK CF campaigner Sharon @CFno1LeftBehind]

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

[#UK CF campaigner Sharon @CFno1LeftBehind]

@SkyHelpTeam I’m requesting the free VIP night in. I don’t care ifs it a rental or not. This was your (sky) offer to me via the “mysky@ app because I’m a vip diamond member. ??

[#UK CF campaigner Sharon @CFno1LeftBehind]

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

[Iain Dale 🏴󠁧󠁢󠁥󠁮󠁧󠁿🇬🇧 ⚒️ @IainDale]

Halal and Kosher should be banned. End of.

[#UK CF campaigner Sharon @CFno1LeftBehind]

@GreatStrides65 @POTUS @VP @JDVance @SecRubio Makes me sick 😡
I pray #Ukraine comes through this somehow
All of #europe must stick together now 🇺🇦

[#UK CF campaigner Sharon @CFno1LeftBehind]

@BenOxlade1 PTSD is still a thing for me (& my daughter) when her fev1 plummeted to below 30% when she was a teenager & realistically the whole family too! Be kind to yourself. Take time to find joy in the little things
The future is so bright for CF these days, especially for kids today 💛

[#UK CF campaigner Sharon @CFno1LeftBehind]

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

[#UK CF campaigner Sharon @CFno1LeftBehind]

@GreatStrides65 Twitter is a joke these days. I rarely go on it.

Very sad @X

Not that they’ll give a damn🙄

[#UK CF campaigner Sharon @CFno1LeftBehind]

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 https://t.co/pvdAPIbkzc

[#UK CF campaigner Sharon @CFno1LeftBehind]

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

[#UK CF campaigner Sharon @CFno1LeftBehind]

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

[Jess @jess_cranfield]

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

[#UK CF campaigner Sharon @CFno1LeftBehind]

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. https://t.co/VN8fsNe8Nw

[#UK CF campaigner Sharon @CFno1LeftBehind]

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. https://t.co/VN8fsNe8Nw

[#UK CF campaigner Sharon @CFno1LeftBehind]

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