Chief Executive of the Cystic Fibrosis Trust. Fighting for Life Unlimited for all! Views are my own.
Joined February 2018
- Tweets 107
- Following 50
- Followers 795
- Likes 336
32 Photos and videos
21 Jun 2024
It's a bit too hot for the hat! Have a fantastic #WearYellowDay and thank you for all you do to support @cftrust
1
5
30
1,234
20 Jun 2024
So pleased to be able to share this news!
20 Jun 2024
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
2
9
76
5,074
23 Nov 2023
Great to meet with the Welsh First Minister yesterday to discuss CF care and innovation and to emphasise the importance of removing any uncertainty about access to life-changing medicines for all those who could benefit in the future as soon as possible.
2
36
3,495
11 Sep 2023
Thank you for every step, every signature and every pound raised. Now is the time to make the change - no one with CF should have to pay for the drugs they need!
9 Sep 2023
Petition handed in✅
It's been a challenging week. All worth it to try and make a difference for my little girl.❤️
#CysticFibrosis #trekforcharlie
@cftrust @cf_care @strawfie @RishiSunak @ChrisMRiches
2
6
27
2,331
7 Sep 2023
This is an incredible effort by Nick and Liam for a really important cause. Nobody with CF should have to pay for the drugs they need!
7 Sep 2023
#Trekforcharlie
Tune into @bbcwm radio today at 12:40!
Over halfway to London to deliver the petition for Free Prescriptions for all CF patients in England!💪
Tracker on stories: instagram.com/its_bambiee_?i…
JG: justgiving.com/trek4charlie
2
7
11
1,581
16 Jun 2023
A lovely morning for #WearYellowDay (there is even a bright yellow ball in the sky!) in a brilliant #CFWeek2023 Thank you to everyone who is getting involved and at the @cftrust we will not stop!
1
8
52
2,443
"...1 in 3 CF families revealed they had run out of food before they could afford to buy more, and 1 in 3 people with CF missed hospital appointments due to the cost."
@CFtrust invite @AMRC charities to get your conditions debated in Parliament next week too.
26 Jan 2023
Following on from our new report in partnership with the @BristolUni, Jim Shannon MP has secured a debate in UK parliament on the 'Impact of cystic fibrosis on living costs'.
ALT White text on a dark blue background: Unite with us as we highlight the true financial cost of living with CF in UK Parliament.
5
8
2,675
13 Jan 2023
Great to have the opportunity this week to speak to the Health and Social Care Select Committee (alongside @ChrisAskewCE and @LizAshallPayne) about the potential of data and digital to transform care and support for people with cystic fibrosis.
1
7
15
2,530
12 Oct 2022
We are looking for some great people to join the @cftrust Team. Please have a look as there might be a fantastic new role for you! cysticfibrosis.org.uk/the-wo…
1
1
8 Jul 2022
Fantastic to see this - brilliant work, brilliantly presented! @JoJofoth and @drchloejames Congratulations to all who made this happen!
7 Jul 2022
Really proud of our fantastic #MicrobialPuppetMasters team from @SalfordPGRs & @LivUni_IVES Day2/5 is really hotting up @royalsociety #SummerScience so many brilliant conversations so far about #Phages #CysticFibrosis #Bacteria #DNA & #ScienceCareers
3
5
David Ramsden retweeted
28 Jun 2022
Today, we’d like you to tell the Health and Social Care Committee (@CommonsHealth) how paying for your prescriptions in England affects you and your family. #reviewthelist (1/3)
4
34
49
17 Jun 2022
It's that brilliant day again..... #CFWeek #WearYellowDay
Thanks to all who text to donate. 'YELLOW5' to donate £5, 'YELLOW10' to donate £10 or 'YELLOW20' to donate £20, to: 70500.
(⚠Text messages cost the donation value your standard network charge and ask the bill payer!)
1
5
29
15 Mar 2022
Great animation showing how collaboration and partnership are at the heart of making real change!
Many of us wouldn't be here today without research. It’s constantly shaping and improving our health and social care. But do you know who funds and supports research in the UK?
Explore the different ways the charity, public and industry sectors #MakeResearchHappen.
#BSW22
1
6
7 Mar 2022
A fantastic Friday at @cftrust clinical trials conference - with inspirational people uniting for a life unlimited!
1
23
David Ramsden retweeted
3 Mar 2022
We are uniting people to stop #cysticfibrosis. Funding vital research, improve care, speak out and race towards effective treatments for all. Cystic Fibrosis Trust is here to make sure everyone with CF can live without limits. ow.ly/9X0e50I9a2g
12
24
2 Mar 2022
This is a really welcome investment in data infrastructure for research and development. The UK Cystic Fibrosis Registry shows how improvements in care can be driven by trusted data and the importance of focusing on the needs of those we are here to help.
2 Mar 2022
Today, up to £200m joint funding between @NHSEngland, @DHSCgovuk and @beisgovuk was announced to improve health data research. This will put the NHS in the driving seat so patients can benefit from more innovative treatments faster.
Find out more: gov.uk/government/news/260-m…
1
10
28 Feb 2022
This is a really important report. Things must change and it is great to see the ambition in @asthmalunguk strategy. I look forward to @cftrust working with @swoolnough and her team when we can make a bigger difference together.
28 Feb 2022
🧵 Today, I’m really proud to let you know that we have a new name and look – and a strategy to tackle the unacceptable state of lung health in the UK. We are Asthma Lung UK @asthmalunguk. We are the UK charity fighting for your right to breathe.
4
13
21 Dec 2021
The CF Community is a special place - an end of year note simply to say thank you for the incredible support you give @cftrust Also, thank you to the amazing friends and colleagues working hard to make a difference for other conditions and causes – you inspire me every day!
1
6
55
16 Nov 2021
Brilliant job by #SurpriseSquad Thank you to the #TheOneShow Go Team #ChildrenInNeed - hope you have an amazing week and Go Team @cftrust !
15 Nov 2021
Last week our incredible #SurpriseSquad 💥 surprised key worker Ryan from the @cftrust
Their challenge was to create an exciting and varied set of exercises for people with Cystic Fibrosis 👉 bbc.in/2YL6J9p
#TheOneShow #ChildrenInNeed @HackerTDog @MelanieCmusic
2
6
David Ramsden retweeted
9 Jul 2021
Thank you @BBCr4today for covering the call for better communication and protections for immunosuppressed people on the show this morning.
cysticfibrosis.org.uk/news/t…
6
15