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

Joined January 2018
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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 youtu.be/JVP-Y0wAD0s #DoTheRightThing
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my CF Hero πŸ’™ retweeted
30 Jul 2025
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: nice.org.uk/guidance/ta1085?…
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my CF Hero πŸ’™ retweeted
Happy Bday M8! London shows are off to a splendid start πŸ‡¬πŸ‡§πŸ‡ΊπŸ‡ΈπŸ€ @KensingtonRoyal
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Welcome to London @taylorswift13 🀩πŸ₯° We couldn’t get tix - but have a blast! Back to @DisneyPlus for us x #cfweek #WearYellowDay
🚨| Taylor Swift has officially taken the stage and kicked off Day 1 of β€˜The Eras Tour’ in London! Follow & turn on our post notifications for immediate updates on the entire show, any SURPRISES & surprise songs! πŸ–€#TSTheErasTourΒ #LondonTSTheErasTour
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my CF Hero πŸ’™ retweeted
πŸ’› We're marking the end of #CFweek in style! @MedDiscCat and @CFAMRSyndicate wearing yellow to support the @cftrust. #WearYellowDay2024 #CysticFibrosis
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my CF Hero πŸ’™ retweeted
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: blog.sciencemuseum.org.uk/cy…
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my CF Hero πŸ’™ retweeted
Our lovely ambassador @4JennyAgutter looking fabulous in yellow! πŸ’› #WearYellowDay
Friday 21st June is Wear Yellow Day! Raising awareness & funds for @cftrust. Join Jenny tomorrow in something yellow .... here's some inspiration! cysticfibrosis.org.uk
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my CF Hero πŸ’™ retweeted
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!
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my CF Hero πŸ’™ retweeted
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. ow.ly/XGMs50SmgJR
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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
▢️Three weeks until petition closes ▢️No recent updates ▢️Sign/share for the next generation of #cysticfibrosis patients #NoOneLeftBehind petition.parliament.uk/petit… @cfaware @VarnalsVintage @RacheyCole @liammchugh1961 @InfamousGreggyG @myCFHero @CFcarer @evergreennebs
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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
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. 🧡
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my CF Hero πŸ’™ retweeted
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; bit.ly/49nJ126
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my CF Hero πŸ’™ retweeted
Are you a parent of a child with CF wishing to have the opportunity to ask teens & young adults with CF about their experiences? Join @cftrustyouth online! Ask YAG parents' evening, Monday 25, 7.30pm. Email cfyouth@cysticfibrosis.org.uk to join this event.
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Quite right @MattHancock Every child deserves to β€˜reach their potential’ -we need Educational Psychologists IN schools, LOOKING for the 20% of people who need *different*support to achieve theirs. Reduce future issues, Empower people to achieve more. β€œWho are my 20%? β€œ
Really important debate in Parliament today on neurodiversity. Early screening matters. Having more information on each child will not only help them, but also help their teachers. This is why universal screening is needed.
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Very worthwhile cause @MattHancock @A_L_F_Official - well done! Please don’t forget screening and in depth teacher education for #dyscalculia #dyspraxia #adhd #asd Current assessment pathway is *failing * young people. #Neurodiversity @NCWeek Ps Matt-comments need to be on.
Absolutely delighted to have secured a slot to reintroduce my Dyslexia Screening Bill into Parliament. Parliament will debate this Bill on 23 April. For more details on my campaign for support for neurodiversity see @A_L_F_Official All support very welcome!
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my CF Hero πŸ’™ retweeted
In June, over 2,000 researchers, doctors and CF teams gathered at the European CF research conference, organized by European CF Society (#ECFS), discussing the latest news in #cysticfibrosis. #ResearchAppreciationDay (1/3)
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my CF Hero πŸ’™ retweeted
πŸ”ΈFrom the UK to Florida - jet lag ✈️ πŸ”ΉHad never paddled on the sea (only rivers) πŸ”ΈNew to paddle boarding Team Neon have completed their 80 mile paddle board challenge raising awareness about the need for global access to #Trikafta along the way. classy.org/team/454643
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my CF Hero πŸ’™ retweeted
Today I am wearing yellow in support of my Grandson and all those #CFwarriors that fight for their best lives daily. @CF_Foundation @cftrust @CFAware @CFAware
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my CF Hero πŸ’™ retweeted
I may have been a day early yesterday but I am once again wearing yellow today as part of #WearYellowDay for #CFWeek2023. Thank you for everything you do @cftrust
Thank you @marionfellows for raising awareness of Wear Yellow Day in parliament as part of #CFWeek2023 & to @PennyMordaunt for echoing this message, on behalf of all MPs.
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