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Session 2: People with lived experience panel

Author/ Session/ 20 September 2025

The Lived Experience Panel invited people from around the globe to share their personal stories and highlight the ways in which they are actively shaping research.

PCD moderator Brett Drummond said: “Our mission goes beyond communicating information. It is about facilitating a two-way dialogue between researchers and patients, and putting the people who live with these conditions at the very centre of that conversation.

“Because when we all work together, we progress faster to better outcomes.”

Whether through patient advocacy, working with national and international organisations, taking part in registries and clinical studies, or amplifying underrepresented voices, each speaker demonstrated the crucial role of patients in the research process.

More than personal stories, these were powerful calls for partnership, inclusion, and equity in research and care.

Here’s what they had to say.

Eduard Pletea, Person living with MS; President of the Romanian MS Society; Executive Committee Member of EMSP.

“I deeply believe that research about us should never be done without us. As patients, we are experts by experience. We live everyday with the realities that science is trying to understand: we know how fatigue shapes our days, how cognitive challenges affect our work and our relationships, and how mental health defines our quality of life. We also know that a treatment isn't truly successful if it's not practical, or if it doesn't fit into our real lives in a way that supports long term adherence and dignity.

“My message is simple: invite us to take part from the very beginning: not just as participants, but as partners. Not just as data points, but as cocreators. Because when patients become partners, science turns into solutions. And solutions will transform our lives.”

Slide

Amy Thompson, Person living with MS; Founder and CEO of MS Together, UK.

“When I was diagnosed at 21, it became very clear that so much of the research, services and conversations about MS weren't speaking to the kind of realities of being young and newly diagnosed living with MS. That's what led me to start the charity MS together, and to get involved in research. I want research to be more relevant, inclusive, and accessible.

“I have put myself forward for various different projects and studies, and I think it is really important to encourage others to do the same. Sharing as many different research opportunities as possible can help make sure people know what's out there. I work with the UK MS register, and I've worked with the MS Pregnancy register as well. If there are registers within your country, sign up. It is such an easy way to get involved in research.”

Slide

Graham Walker, Person living with MS; President of MS Taranaki, New Zealand.

“When I was diagnosed, people told me that I would soon become an expert – and that was absolutely true. The aspects of MS that matter most for a person with MS are so different to those that matter most to a researcher or a clinician. Our point of view is very valuable, and I'd encourage everybody to get involved in research if they possibly can.”

“My involvement with research has mainly been as a board member, deciding who gets the MS International Federation (MSIF) fellowship grants. The fellowship pays for early career MS researchers from low- and middle-income countries to work at a research institution outside of their own country. It has really been amazing, over the last six years, to be able to sit down and evaluate what might be important to a person with MS.

Slide

Marion Jones, Person living with NMOSD; Ambassador, The Sumaira Foundation

“I am extremely passionate about health equity. People like me – a woman, an African American, a minority – are disproportionately affected by NMOSD, so it is really important to be a part of studies and clinical trials. I go out and I talk to other people who look like me, and I encourage them to do the same if they want the drugs we need to help us live and thrive.

“As I look around the room and hear the stories being shared on the stage, I know we are in the company of some brilliant minds. And that’s how I know we are on the cusp of a cure. Thank you all for the work that you are doing, and for giving patients like myself the opportunity for our voices to be a part of the conversation.”

Slide

Ana Torredemer, President of Multiple Sclerosis Spain

Ana highlighted how PCD and her organisation shared similar goals: engaging, empowering, and advocating for people living MS and related neurological conditions.

“This meeting is not just about research: it is about people. Everyone living with MS or NMOSD or MOGAD wants an end to these diseases. The only way to do that is support research – because researchers are the only ones that will find the causes of the diseases, and, subsequently, the treatments to stop them.”

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Sessions You are here: Home / Sessions / Session Two

Session 2: People with lived experience panel

Here’s what they had to say.

Sessions
You are here: Home / Sessions / Session Two