Maxine Flewett

Happy New Year! 🥳 Still looking for a #NewYearsResolution that doesn't involve giving up chocolate? 🍫 Here's one you can tick off straight away! Confirm your organ donation decision - it only takes two minutes ⏰ orlo.uk/Dx65s

Quietly remembering over 8,000 people who died of pulmonary fibrosis in 2024, including DJ Johnnie Walker, Indian musician Zakir Hussain and patient advocate Maggie Bartlett. As the year comes to an end, our thoughts are with them and their families. @ActionPFcharity #StopPF

So grateful to @MichelleWelshMP & @LizTwistMP for highlighting issues faced by people affected by PF in @JimShannonMP's respiratory health debate in Parliament yesterday. Together, we can drive change so that everyone with PF has timely access to diagnosis, treatments & support.

Today is the 30th anniversary of the organ donor register set up by the Cox family in memory of her beloved brother who donated his organs. Anyone could need a transplant, and if you support organ donation please add your name to the register on the NHS app, or go organdonation.nhs.uk. Families and loved ones will always be consulted before organ donation goes ahead, and if they don’t know they are likely to decline. In 9 out of 10 cases when that person is on the register, families and loved ones consent, which could save up to 9 lives. It takes less than 2 minutes and could be the best thing you do today. #OrganDonationWeek @NHSOrganDonor

🎉We're delighted to announce that two new pulmonary fibrosis support groups will be launching in November! ⭐Rhondda Cynon Taff: Monday 11 November actionpf.org/support-groups… ⭐Gloucestershire: Wednesday 20 November actionpf.org/support-groups… #pulmonaryfibrosis #pf #ild

Organ donors save lives

Did you know? You can record your #OrganDonation decision on the NHS App in just a couple of minutes. It’s quick, easy, and could save up to 9 lives in the future. 💕 It's the best thing you'll do today!

Dr Anne-Marie Russell, EU-PFF SAB Member, highlights oxygen therapy policy challenges including the lack of standardisation. This issue underscore the need for effective policies to ensure equitable access for all #PF patients. #BreathingLife #PFMonth #CurePF #OxygenAccess

Hi, I'm Lauren Flewett and I've been a Trustee since 2018. I became a Trustee because my dad had Idiopathic Pulmonary Fibrosis (he has now received a double lung transplant) and I felt I wanted to help others like him to make the most of their lives with this horrendous illness.

We’re launching our campaign ‘Breathe’ for #PFMonth24 Our video, voiced by @BBCRadio2 DJ @piratejw, who's living with PF, shows the devastating effects of the disease. Contains sensitive content. Please share so more people can get support: actionpf.org/get-involved/a… @TiggyWalker

📣 We've found that people living with #pulmonaryfibrosis experience a concerning level of disconnection and isolation. More support is needed. Together can make a difference. Help us to raise awareness by liking and sharing this post💜 Read our survey: actionpf.org/news/people-wi…

29 Feb is @rarediseaseday - and we are joining in to raise awareness of #PulmonaryFibrosis, a rare disease for which there is still no cure. Please join us on this important day! Only together can we change the world for the better for patients with #PF & other rare diseases!

For the safety of all #PFSUMMIT24 participants, free #Covid-19 tests and FFP2 masks will be available in Castelldefels. Please help protect yourself and your fellow participants! Thank you for your understanding and support! #PulmonaryFibrosis

If you can't make it to Castelldefels or don't want to make the journey - no problem! You can also attend #PFSUMMIT24, which is designed as a hybrid event, virtually and have the same experience as on site! Click here to register: tinyurl.com/2024PFS

Happy New Year to you all! We are kicking off 2024 with a webinar on "Living with #LungFibrosis: Optimising #MentalHealth & Wellbeing" on Jan 31st. Register for the event, which is free, here: us06web.zoom.us/webinar/regist… #pulmonaryfibrosis #PF

📣 Today, we're launching the results of our survey, spotlighting the devastating impact of PF on all aspects of life. The title reflects what many people told us - they would have felt better understood & supported if they'd been diagnosed with cancer. actionpf.org/news/people-wi…

🫁 Today is #WorldLungDay 🫁 Earlier this month, we released statistics which revealed that around 1 in 3 people in the UK have never heard of pulmonary fibrosis: actionpf.org/news/new-surve… 📣 Help us to change that, #UseYourLungs & share this post to raise awareness. #PFmonth23

🔊 This inspired us to create this year’s public campaign: ‘Hear My Lungs’ where people can listen to the sound of PF. ➡️ See the campaign: hearmylungs.com 🫁 #UseYourLungs and share this post to raise awareness. (🧵2/2)