It is with great sadness that we share the news that Steve Jones recently passed away. He was an extremely valued founder and Chair of the ELF Pulmonary Fibrosis Patient Advisory Group, part of the ELF transplantation working group and of course was a key part of the European Pulmonary Fibrosis Federation (EU-PFF) and Action for Pulmonary Fibrosis (UK). 

At ELF, we wanted to take a moment to acknowledge Steve’s contribution and to share our thanks for the time, experience and perspective he gave to our groups over the years. His involvement helped strengthen the patient voice in our work, and he will be greatly missed.

Our thoughts are with Steve’s family, friends and everyone who knew him. 

“Steve’s influence on Action for Pulmonary Fibrosis and the wider pulmonary fibrosis community is hard to overstate. Whether he was campaigning for better access to treatment, chairing APF’s transplant support group or representing people affected by PF in research and across Europe, he brought the same drive and determination to everything he did.  

“His greatest strength was his ability to bring people together. He understood that real change would only come if people living with PF, families, charities, healthcare professionals, researchers and industry worked towards the same goal: better care, better treatments and, ultimately, a cure.  

“I feel very fortunate to have known and worked alongside Steve. We will miss him enormously, but his influence will continue through APF and across the PF community. We will carry his determination forward.”  

Daniel Saxton, Chief Executive Officer, Action for Pulmonary Fibrosis  

“It was a great pleasure and a very valued experience to have known Steve from the time of the formation of the PF PAG in 2021. His experience and tireless work concerning lung fibrosis patients will always be remembered. On a personal level, Steve was very helpful to me concerning a difficult health issue that I had approximately six months ago, such was his caring nature. My thoughts are with Steve’s family, relations and friends. May he Rest In Peace.” 

Matt Cullen, PF PAG Member     

 “As another lung transplant recipient, I had the pleasure of working with Steve on the Patient Perspective chapter of the ERS Monograph Lung Transplantation edition.  Through that, I got to see not only how passionate he was in advocating on behalf of patients, but also how measured and professional he was too. Sending love to his family and friends.  

Gill Hollis, Transplant PAG

 “Steve was an incredible man and he will be very sadly missed in the PF community. He is irreplaceable and I will always be thankful for his advice and friendship.    

Tom, PF PAG  

“Steve was a great friend, my mentor, and I was in awe of everything he achieved and the care and compassion he showed to patients with IPF/PF, and how valuable his work was with transplant recipients. We are devastated of his passing and I have lost a true friend.”  

Ron Flewett, Transplant PAG

I was very sad to hear this news and know that Steve will be greatly missed by so many. I was lucky to get to know Steve and work with him when the Pulmonary Fibrosis Patient Advisory Group was set up at ELF around 6 years ago. Steve chaired the PAG and I helped to facilitate their meetings as an ELF staff member at the time. I feel lucky to have witnessed at close hand Steve’s drive, dedication and professionalism as a powerful advocate for everyone affected by PF and also his humour, warmth and care for people. He had a zest for life and would often talk with delight about his family and grandchildren on our catch-up calls. I know his impact will continue to resonate far and wide and my thoughts go out to his family, friends and colleagues at this sad time.

Jeanette Boyd, Former ELF employee

Steve was a inspirational patient advocate who always pushed us at ELF to do more. He contributed as a member of the ELF Council for 3 years, forming a PF Patient Advisory Group during his mandate. He then Chaired that group and was involved in many of their activities – driving forward new ideas and connections. He was a joy to work with and inspired others at every stage. He will be hugely missed in the respiratory community, but his legacy will absolutely live on.

Pippa Powell, ELF Director