my CF Hero 💙

Mother to a 9 year old girl, with the life limiting condition #CysticFibrosis. Fighting for access to medicines #Orkambi #Kaftrio (#Trikafta) #DoTheRightThing

[my CF Hero 💙 @myCFHero]

Will @NHSEngland @DHSCgovuk and @VertexPharma work together to grant access to #Orkambi for #cysticfibrosis sufferers like @MyCFHero Stop the suffering Give them a #lifeunlimited Together you can #StopTheClock Please WATCH this short video https://t.co/oKendCNXZU #DoTheRightThing

[my CF Hero 💙 @myCFHero]

@BarackObama Please come back. The world needs you.

[NICE @NICEComms]

NICE approves Alyftrek for treating cystic fibrosis in people with a specific genetic form of the condition.

The once-daily therapy is now available for those eligible aged 6 and over, following swift approval after UK licensing.

Full guidance: https://t.co/dQTI9x1nOa

[my CF Hero 💙 @myCFHero]

@VertexPharma https://t.co/vXcY6G0ltZ

[my CF Hero 💙 @myCFHero]

@volvocars Hello @Volvocars - please specify who to contact - your staff are passing the issue and all claiming not responsible. Dealership has issued an aggressive legal letter. Car remains in your garage, car undrivable, vehicle damaged on site, @mycfhero’s summer holiday ruined. #Volvo

[Taylor Swift @taylorswift13]

Happy Bday M8! London shows are off to a splendid start 🇬🇧🇺🇸🤝

@KensingtonRoyal

[my CF Hero 💙 @myCFHero]

Welcome to London @taylorswift13 🤩🥰
We couldn’t get tix - but have a blast!
Back to @DisneyPlus for us x #cfweek #WearYellowDay

[The Eras Tour @tswifterastour]

🚨| Taylor Swift has officially taken the stage and kicked off Day 1 of ‘The Eras Tour’ in London! Follow & turn on our post notifications for immediate updates on the entire show, any SURPRISES & surprise songs! 🖤#TSTheErasTour #LondonTSTheErasTour

[my CF Hero 💙 @myCFHero]

@Sellebrity_UK @CalumBest @DorchTownFC @cftrust 👏👏👏

[Medicines Discovery Catapult @MedDiscCat]

💛 We're marking the end of #CFweek in style! @MedDiscCat and @CFAMRSyndicate wearing yellow to support the @cftrust.

#WearYellowDay2024 #CysticFibrosis

[Science Museum @sciencemuseum]

Today is #WearYellowDay, the culmination of Cystic Fibrosis Awareness Week, organised by @cftrust to raise awareness of the condition that affects over 11,000 people in the UK.

Find out more about the trust, who are celebrating their 60th birthday, and its work supporting thousands of children, families and adults with CF: https://t.co/Nlfr6nVVeA

[Cystic Fibrosis Trust @cftrust]

Our lovely ambassador @4JennyAgutter looking fabulous in yellow! 💛 #WearYellowDay

[Jenny Agutter News @4JennyAgutter]

Friday 21st June is Wear Yellow Day! Raising awareness & funds for @cftrust. Join Jenny tomorrow in something yellow and here's some inspiration from previous years!

[Cystic Fibrosis Trust @cftrust]

Today, NICE have given approval for the life-changing #cysticfibrosis modulator drugs to be made available on the NHS in England. This follows many years of campaigning by Cystic Fibrosis Trust and people right across the CF community.

https://t.co/x7TV04xqXU

[my CF Hero 💙 @myCFHero]

@DavidRamCFT Amazing news and a huge relief for all families living with #cysticfibrosis. Thank you to all the teams involved, and for continuing to stride ahead for more innovation for #CF. #nodayoff #nooneleftbehind

[my CF Hero 💙 @myCFHero]

@cftrust Thanks for the update David & team @cftrust. Great to hear modulator talks are well.

#NoDayOff sums it up perfectly.

I’d challenge anyone to workout day & night for just 30 days to begin to feel how living with #cysticfibrosis is. (Essential Airway clearance and physiotherapy)

[my CF Hero 💙 @myCFHero]

@cftrust #Heroes!! 👏👏👏👏

[my CF Hero 💙 @myCFHero]

@VictoriaAtkins Whole heartedly support the ban on cigarettes 👏 and the damage they create.

@VictoriaAtkins - could you share your position to ensure patients born with lung issue #cysticfibrosis continue to be able to access life saving medicines #Kaftrio #Orkambi - some face refusal .

[my CF Hero 💙 @myCFHero]

It would be incomprehensible to deny #LifeSavingDrugs4CF to some #cysticfibrosis patients based on NHS contract renewal dates.

#Kaftrio has given @mycfhero normal function / a future. We must dothe same for all patients.

@VictoriaAtkins
Will you #LetThemLive?
@Daily_Express

[Strawfie Challenge @strawfie]

▶️Three weeks until petition closes
▶️No recent updates
▶️Sign/share for the next generation of #cysticfibrosis
patients

#NoOneLeftBehind

https://t.co/nap906y6hg
@cfaware @VarnalsVintage @RacheyCole @liammchugh1961 @InfamousGreggyG @myCFHero @CFcarer @evergreennebs

[my CF Hero 💙 @myCFHero]

Well done @MattHancock

All children deserve to thrive, & reach their full potential.

Fully support screening in schools for #Neurodiversity -unlocking potential for the 20%.

Every school needs to ask #WhoAreMy20%?

Looking forward to hearing the details screening &support

[Matt Hancock @MattHancock]

I’ve been blown away by the support for my Bill in Parliament over the past 2-years, where I've been campaigning for the universal screening of dyslexia in primary schools. 🧵

[Jack Meggitt-Phillips @MeggittPhillips]

I have some terrifically terrible news.

This Sat I will be asking @DanielHandler a series of unfortunate questions at Alexandra Palace (@NLBookFest), and then on Sun at @oxfordlitfest.

Oxford has sold out. Final lethal tix for @Yourallypally here; https://t.co/ZFxzMm9djJ