Steve Jones

Trustee of @ActionPFcharity, a patient organisation committed to supporting people living with pulmonary fibrosis. Board member of @EU_IPFF

[Steve Jones @ActionPFsteve]

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

[Trevi Therapeutics @TreviThera]

Our Phase 2a RIVER trial in patients with refractory chronic cough has completed enrollment. We look forward to releasing topline results in the first quarter of 2025.
Read the full press release here: https://t.co/psBB8Aeqj6

#Cough #ClinicalTrials #Biotech #Research

[Argyris Tzouvelekis @atzouvelekis]

Excellent lecture by Sara Tomassetti paving the way for better understanding ILAs #ICLAF2024

[Naftali Kaminski @KaminskiMed]

So proud of Prof Lindell, who's giving the first Dan Rose Memorial Lecture at #ICLAF2024 - Dan was an amazing patient advocate who created the Pulmonary Fibrosis Foundation and single-handedly transformed Pulmonary Fibrosis patient support & advocacy.
Well deserved, Kathy!!!

[Naftali Kaminski @KaminskiMed]

So heartwarming to see the Great Prof Lindell give the inaugural Honorary Dan Rose Lecture at #ICLAF2024 - keeping the patients at the center!
#GreatICLAFTalks

[Steve Jones @ActionPFsteve]

@ILFA_Ireland Of course it was - ILFA had to be there!

[Steve Jones @ActionPFsteve]

@Jennydickens41 @EimearRutherfo1 @LabRawlins @KyungtaeL Brilliant. Jenny. Well deserved!

[Steve Jones @ActionPFsteve]

Same here - sorry not to be there - have a great meeting !

[Katleen Leceuvre @KLeceuvre]

@ild_inn @neen865 @EdgbastonPark Sorry I cannot be there. Enjoy the days,
Thinking of you 😊

[Steve Jones @ActionPFsteve]

Organ donors save lives

[ILFA Ireland @ILFA_Ireland]

Today is #EuropeanDonationDay #OrganDonorsSaveLives
Please have a conversation with your loved ones and let them know your wishes on organ donation.

[Steve Jones @ActionPFsteve]

@jamesgwinnutt @British_Airways @SimonCalder Hi James - it seems very unfair that if you book to fly home on another airline this absolves BA of all responsibility despite having delayed you by 22 hours. @SimonCalder, is BA right about this?

[Steve Jones @ActionPFsteve]

C’mon BA. First you delay our flight yesterday from Corfu from 1440 to 1900. Then the captain says he has run out of hours and we have to find hotels for the night with a new dep at 0930 today. Now you have delayed further to 12.45. What a joke! @British_Airways @SimonCalder

[Steve Jones @ActionPFsteve]

@PilarRiveraOrt1 @EU_IPFF Thanks Pilar. I’ll be staying on as a board member of EU-PFF so let’s keep in touch !

[Steve Jones @ActionPFsteve]

My 4-year term as President of @EU_IPFF ‘the Voice of Pulmonary Fibrosis Patients in Europe’ finished today. It’s been great working with amazing colleagues and partners and I am pleased to warmly welcome John Solheim (Norway) as the new President of EU-PFF. Over to you, John!

[Steve Jones @ActionPFsteve]

@RaphaelBorie @EU_IPFF Thanks - I’ll be staying on as a member of the EU-PFF Board so let’s keep in touch

[Steve Jones @ActionPFsteve]

Geat news! Kudos.

[Vincent Cottin @OrphaLung]

A very useful change indeed, supported by TF 13 on PH in chronic lung diseases

[Steve Jones @ActionPFsteve]

Excellent meeting of the Leicester Centre for Fibrosis Research today.

[Bibek Gooptu @bedoctored]

- Developing local & national panels of people w chronic disease mediated by fibrosis
- Raising fibrosis up the research policy agenda
@ActionPFsteve @LouiseVwain @DrAnvesha_Singh @haresh11
Even an impromptu cameo from the VC @NCanagarajah!

[Steve Jones @ActionPFsteve]

British media reports veteran BBC DJ Johnnie Walker @piratejw has advanced idiopathic pulmonary fibrosis. Our thoughts are with you Johnnie and your family at this difficult time & with the thousands of other people living with this devastating disease. @ActionPFcharity #curePF

[Steve Jones @ActionPFsteve]

Discuss organ donation with your family NOW. In UK it’s their decision if you die - not yours

[Breathing Matters @Breathingmatter]

The law around organ donation changed in England on 20 May 2020 to an opt-out system. 8/10 people say they would consider donating their organs, but only 1:3 have told their family.
Have the conversation now and register your decision https://t.co/wRcBmWK6EV #OrganDonation

[EU-PFF @EU_IPFF]

📢 The 6th session webinar on "Pulmonary Fibrosis and Cough – Causes, Treatments, and Quality of Life" is now available as a recording. You can find the full-length webinar along with all previous sessions here ⏯️ https://t.co/ZZOUTmJXSL