Mother to a 9 year old girl, with the life limiting condition #CysticFibrosis. Fighting for access to medicines #Orkambi #Kaftrio (#Trikafta) #DoTheRightThing
London, England
Joined January 2018
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Pinned Tweet
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
my CF Hero 💙 retweeted
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?…
my CF Hero 💙 retweeted
Happy Bday M8! London shows are off to a splendid start 🇬🇧🇺🇸🤝
@KensingtonRoyal
Welcome to London @taylorswift13 🤩🥰
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 ‘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 💙 retweeted
💛 We're marking the end of #CFweek in style! @MedDiscCat and @CFAMRSyndicate wearing yellow to support the @cftrust.
#WearYellowDay2024 #CysticFibrosis
my CF Hero 💙 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…
my CF Hero 💙 retweeted
Our lovely ambassador @4JennyAgutter looking fabulous in yellow! 💛 #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
my CF Hero 💙 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!
my CF Hero 💙 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
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
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
my CF Hero 💙 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
my CF Hero 💙 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 [email protected] to join this event.
Quite right @MattHancock
Every child deserves to
‘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.
“Who are my 20%? “
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!
my CF Hero 💙 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)
ALT Quote from David Ramsden, Chief Executive of Cystic Fibrosis Trust, “The ECFS Conference was an impressive and important event. What really struck me was the sheer scale and scope of the research efforts that are taking place in Europe and beyond. It was great to see further evidence of the impact of Kaftrio and the emphasis placed on what that means for the changing needs of people who can benefit and the treatments and support they will need. It was also fantastic to see how central the needs of those who can’t benefit were and the energy to make a real difference for all was in the sessions and in the conversations.”
my CF Hero 💙 retweeted
🔸From the UK to Florida - jet lag ✈️
🔹Had never paddled on the sea (only rivers)
🔸New 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
my CF Hero 💙 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
my CF Hero 💙 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.
my CF Hero 💙 retweeted
Please sign and share this petition.
All adults with #cysticfibrosis in England should have free prescriptions in line with other regions of the UK and other chronic illnesses.
petition.parliament.uk/petit…
#WearYellowDay #wearyellowday2023 #cfyelfie #cfaware #CFWeek #cfawareness