@timwotton

Husband to Katie & father to Felix, comms manager in London, sport lover with CF - author, podcaster & speaker about my survival experiences to help others

 London
Joined August 2008
  • Tweets446
  • Following949
  • Followers798
46Media
Thrilled to have benefited from 3 years of the CF wonder drug Kaftrio! Enjoy my little celebration video!
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"This has to be for everyone" #Trikafta4all At 51 and still playing hockey (in a team with his son!) @timwotton is living proof of how effective #Kaftrio/#Trikafta really is All people with #cysticfibrosis in every country should have the chance to access CF modulators #hope
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It's not always been easy to share my hidden disability in the workplace. I hope this is changing with increased diversity, inclusion & belonging. Here's my testimony via my blog post '(In)visible in the workplace'... timwotton.wordpress.com/2022…
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Let's help people with #cysticfibrosis in poor & middle income countries gain access to life-saving CFTR modulator therapies A RT or small donation will help @TanyaKoorts @SrbijaCf @FQuistica @vaincrelamuco @CFAware @CF_vs_Everest @timwotton @CF_Mummy crowdfunder.co.uk/p/cf-drugs…

Universal access to cystic fibrosis drugs now!

We took on big pharma & won, helping thousands of kids access lifesaving cystic fibrosis treatment in the UK. Help us take the fight global!

crowdfunder.co.uk
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“I have a strong urge to write something that will change people... to give them a way of seeing something they didn’t even realize they weren’t seeing.” - Mallory Smith ✨ So she did. 🎬 And now the documentary based on her secret journals comes out January 25th.
A young woman is leaning against a tree trunk, looking contemplative, on a sunny day with palm trees and sand in the background. She is using a nasal cannula.

ALT A young woman is leaning against a tree trunk, looking contemplative, on a sunny day with palm trees and sand in the background. She is using a nasal cannula.

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Very kind promotion from @CfJimmyb about my CF survival memoir ‘How have I cheated death?’. Thanks & all the best for CF Week!
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Delighted with @cftrust for the kind promotion. Onwards & upwards! Love to all CF community who are more resilient than they ever realise x
Cystic Fibrosis Trust@cftrust23 Apr 2021
Have you read Tim's blog yet? When @timwotton was diagnosed with cystic fibrosis in 1971, his parents were told he would only live to his teenage years. Instead, he celebrated his 50th birthday earlier this year. ow.ly/Y6ey50EvN1D
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Check out some of the reasons I feel optimistic, despite all the gloom of the pandemic, via my latest blog post 'Optimistic'... wordpress.com/view/timwotton…
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#cysticfibrosis #cftrust I've been on the new CF drug #Kaftrio for a few months now. Something Changed! is my new blog... timwotton.wordpress.com/
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Proud moment to share some cf patient insights at #ecfs2020
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Cystic fibrosis treatments: 700 more will enjoy access to new drug express.co.uk/news/uk/133613…

Cystic fibrosis treatments: 700 more will enjoy access to new drug

HUNDREDS of cystic fibrosis sufferers prevented from taking a wonder drug in the UK are now set to get it in the New Year, we can reveal.

express.co.uk
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Replying to @fatallyfibrosed
@fatallyfibrosed @MotherhoodvsCF @CFno1LeftBehind @Alidilly @timwotton @MrDeanP @_MissMoo_ @Guatemalagirl @gayle_pledger @GreatStrides65 @jess_cranfield @OliDillon @g_maynard @Daily_Express @blakeydark @VertexPharma @ashfieldlee @MattHancock
Chris Riches@ChrisMRiches10 Sep 2020
express.co.uk/news/uk/133380… Great to see this. @Daily_Express has fought alongside #cysticfibrosis sufferers for 18 months now. Over 300 articles in that time on the cruel disease, proving media can be a positive force for action. #dailyexpresscrusade4cf #kaftrio @MattHancock @NHSuk

Cystic fibrosis sufferers' joy as life-saving drug is rolled out

CYSTIC fibrosis sufferers were celebrating a major milestone yesterday as wonder drug Kaftrio began its rollout across the UK.

express.co.uk
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Dear Marc & the CF community... I started kaftrio this morning! Early stages feel like an IV stirring things up! Here’s comes the hot stepper! 🤗😉
Marc Cotterill@MarcCotterill4 Sep 2020
Shout out to all my friends taking delivery of the best present they could ever wish for this weekend and over the coming weeks. Enjoy it, celebrate it, share it! #kaftrio #Trikafta #ThanksKaftrio
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During lockdown, there was little prospect of returning home or starting a great new medication... but hope came with this trick, which you can read about on my blog - 'Seeing is believing'... timwotton.wordpress.com/
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Happy Friday! I’ve heard from a journalist that eligible CFers should have access to #kaftrio from 28 Aug. Bring it on...
Cystic Fibrosis Trust@cftrust21 Aug 2020
The EMA license has been granted for the triple combination therapy #Kaftrio, known as #Trikafta in the US. More details to follow.
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24 weeks ago to the day, I started #kaftrio #trikafta. At the time, my ability to run was pretty much non-existent, managing just 1min on flat treadmill. With a bit of help from @NHSC25K, I’ve just ran for 20 minutes without stopping. I couldn’t be happier! #ThanksTrikafta – at Cheadle, England
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Replying to @Alidilly @blakeydark @MattHancock @jilli09
Only 19 days (maximum) till we get that all important .@EU_Commission rubber stamp Please hurry up Don’t make us wait another 19 days Do it now We are desperately waiting🙏🏻 I’d like Jess to get this before she goes off to university #kaftrio .@KingsCollegeNHS .@hah_insights
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Good on you Marc! There are thousands of us in the UK desperately waiting to start this drug ASAP! I should know as I was up all night coughing (for my 49th year!)
Marc Cotterill@MarcCotterill10 Aug 2020
After 20 years of rising to uncontrollable coughing, waking up relaxed, calm, rested and taking a long deep breath is something I’ll never take for granted. It’s hard to explain to others who’ve always had that luxury. #thankskaftrio
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As a community I think we'd all like an update on Hailey Mann's situation as soon as possible @cftrust @NHSGrampian @NicolaSturgeon From previous experience, it seems entirely possible that Hailey could have #Kaftrio by the end of this week if the right people make that happen.
Strawfie Challenge@strawfie5 Aug 2020
Miss Mann, said: "We still don't have the European licence, so until that comes through we don't have the drug. "It could be weeks or months & I don't have the time. "I need it now and I do not believe there's not a way to do that." bbc.co.uk/news/uk-scotland-5…

'Life-changing' cystic fibrosis drug approved for use on the NHS

Hailey Mann, who is making end-of-life preparations, fears the breakthrough may have come too late.

bbc.co.uk
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Hope in tablet form But some have desperate need For Kaftrio NOW Some people are teetering on the edge - September could be too late - is there a way to give access now to people in this position? @cftrust @EMA_News @blakeydark @MattHancock #PoetryHealth #kaftrio @PoetryHealth
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