ELF are deeply saddened by the passing of John, a dedicated patient representative and valued member of the ELF community. Living with COPD, John brought an authentic voice, compassion, and understanding to his work, representing the perspectives of people living with this condition.
Through his involvement in ERS task forces to develop core outcome sets on COPD and pneumonia, John shared his experiences with thoughtfulness and conviction. His insight, commitment, and sense of humour enriched every discussion and left a lasting impression on everyone who had the privilege of working with him.
John will be greatly missed by his fellow patient representatives, clinicians, researchers, and the ELF team. We are grateful for his contributions and the difference he made in shaping more patient-centred research and care.
“I met John through the COPD Foundation’s State Captains program, and from the very beginning, his spirit stood out. Despite living with lung disease, John never let it slow him down. He embraced every opportunity to volunteer, advocate, and connect with others—always showing up with energy, compassion, and a ready smile.
John was the kind of person you could count on. Whether it was lending a hand, raising awareness, or simply being present, he was there. He gave a voice to those who couldn’t speak for themselves and offered strength to those who needed it most.
His legacy lives on—not only in the work he accomplished, but in the countless lives he touched and the advocates he inspired. We carry his mission forward, honoring his memory by continuing to educate, support, and fight for those affected by COPD.” Audrey Chavez
“I first met John Linnell in October of 2012 when GSK brought 10 COPD patients from around the USA to Chicago to help create their COPD website. We were there for 4 days and became good friends. At that time there were very few patient advocacy groups for COPD patients. I was active with a list-serve group called EFFORTS (Emphysema For Our Right To Survive), and I encouraged John to join the group, and from there John grew in his love and dedication to advocacy and education. We attended many of the same conferences, served on many of the same boards of directors, and John’s enthusiasm and dedication never waned, even as his health began to fail. He had a great sense of humor – lots of “dad” jokes. I miss him terribly. He was a wonderful friend and gave it all he had until the end.” Karen Deitemeyer
“John Linnnell was a tireless COPD advocate. He was an excellent advocate, who participated in COPD study related projects, symposiums, and expert panels. What I will remember most about John is his friendship, his positive attitude, humor and passion for people, and travel. I miss our near daily conversations. He always left me laughing more smiling. He was a bright life in this too often dark world.” Phyliss DiLorenzo
“John Linnell was not a quitter. Despite his struggles for breath, he brought his wit, wisdom and oxygen throughout the US and Europe. He also brought a message of hope for all with lung disease. His passion and advocacy lives on in us and in all those lives he touched, inspired and enriched.” Grace Anne Dorney Koppel
“John was a mentor to me. If I had a question he was always there to walk you through the answer. Miss him.” Barry Hoehn
“John Linnell was a loved and respected member of the COPD patient community. He contributed to his fellow COPD patients and the COPD Foundation community in many ways- from providing encouraging words to the newly diagnosed, to advocating for access to oxygen and better medications by participating in “lobbying days” in our Capital. His smile, sense of humor, and kind words will be greatly missed by our community.” David Mannino
“John will be deeply missed as both an amazing person and a passionate health advocate. He was one of the most insightful, engaged and dedicated patient representatives I have worked with, always bringing clarity, empathy and a strong patient voice to every discussion. We worked together on several projects, including the ERS COPD and pneumonia core outcome sets and the ICS-RECODE study, and his kindness, integrity and commitment to improving patient care will leave a lasting legacy.” Alexander Mathioudakis
“We’d like to take a moment to remember someone who made this world–and our community–a whole lot brighter: our friend and longtime advocate, John Linnell.
John wasn’t just a powerhouse in the world of COPD advocacy–he was the kind of person who could light up a room with a story, a quick joke, or that signature grin. Diagnosed with COPD in 2005, he took that challenge and turned it into a mission: to make sure no one living with this disease ever felt alone or unheard.
And he didn’t just show up–he showed out.
John served on boards like the U.S. COPD Coalition, EFFORTS, and Right2Breathe, was a State Captain for the COPD Foundation, worked on research teams from Johns Hopkins to the University of Illinois Chicago, and even reviewed research proposals for the Department of Defense. Wherever there was a seat at the table, John pulled up a chair and brought the patient voice with him.
But beyond the titles and accomplishments, John was a storyteller, a people person, and someone who just made things better. He could make you laugh when you needed it most, and somehow always knew the exact right thing to say.
He loved cooking, traveling, and spending time with his sweet wife, Barb. The two of them shared a beautiful bond that was easy to see and even easier to admire. And if John had the chance to be on a cruise? He was all in. So while we’re missing him deeply, we like to think he’s sailing off into the sunset–coffee in hand, cracking jokes, and making new friends on the most beautiful cruise of all.
John, thank you for everything you gave–to the community, to advocacy, and to all of us lucky enough to know you. We’ll carry your light forward and keep your memory close.
Bon voyage, friend. You are deeply missed and forever remembered!” Brandon Holmes
