For more than two decades, George Pepper has been dedicated to helping people living with multiple sclerosis find connection, support, and a sense of belonging. After his own MS diagnosis in 2004, he recognized a need for spaces where people could learn from one another's experiences and founded Shift.ms, a global digital community that now supports more than 85,000 members worldwide.
Spotlight: George Pepper - Building Community and Bringing the Patient Voice to the Forefront of MS Care
%20-%20Edited%20-%20Edited.jpg)
Today, George brings that same passion for patient-centered care to the Multiple Sclerosis Implementation Network® (MSIN®) as a patient ambassador and member of the MSIN Steering & Oversight Committee (SOC). Drawing on both his lived experience and years of advocacy work, he helps ensure that the voices of people living with MS remain at the center of efforts to improve care, outcomes, and quality of life for the entire MS community.
We recently had the opportunity to speak with George about how his own MS journey led him to advocacy, what it means to represent the patient perspective within MSIN, and what gives him hope for the future of MS care and research.
How has your experience living with MS shaped the way you approach advocacy and your work with MSIN?
"It may be a familiar story for many, but after I was diagnosed, once I worked through the initial distress and overwhelm, I wanted to find people “like me”. I wanted to know that others were out there, people of a similar age, in a similar situation, going through the challenges I was experiencing, faced with the decisions I was having to make. I wanted to learn from their experiences, hear how they were coping with whatever MS threw at them.
To give some context: I was diagnosed in 2004. Social media was in its infancy. I was still a couple of years from hearing about Facebook. YouTube didn’t exist. iPhones were a few years from being launched. It was a different time!
I was determined to find a way to connect with other people with MS. After a couple of years of trying to find the right support for me, I founded the digital community, Shift.ms. The Shift.ms community has steadily grown and now has 85,000 members. The community is now based on a mobile app, and over half of the Shift.ms community are based in the US. Shift.ms remains focused on connecting people, supporting them to make sense of their MS together, and giving them the tools to proactively manage their health, inspired by their community's experiences.
I have been fortunate to have known of the Multiple Sclerosis Association of America, and its President and CEO, Amanda Montague, for many years. Over the last 12 months, I have been fascinated to learn about the vision for the Multiple Sclerosis Implementation Network (MSIN) and how it involves people with MS at its core, with a mission to improve quality of care and outcomes for people with MS. When I was asked by MSAA if I would consider applying to become a patient ambassador for the Network, I had no hesitation in putting my name forward and I was thrilled to join MSIN earlier this year."
What does it mean to you to serve on the SOC and help represent the voices of people living with MS?
"It is such a privilege to be part of MSIN's Steering & Oversight Committee (SOC), working alongside such a skilled and knowledgeable group. It has been a pleasure to join Anita Williams, a fellow patient ambassador, and Claude Pinnock, a former patient ambassador turned Chief Operating Officer, as people living with MS on the SOC. And that's before mentioning Kate Durack, Director of Communications for MSIN, who also lives with MS and helps ensure that the patient perspective remains woven throughout the network's work.
MS impacts people in such a wide variety of ways and it is our responsibility, as patient representatives, to ensure that the whole community, with its various flavors of MS, is considered at every stage of MSIN.
My colleagues constantly remind me how important it is to have people with MS leading the direction of MSIN. It is impressive to see the emphasis placed on the patient voice by everyone involved in MSIN, and how much room is given to learn and understand the perspective of people with MS."
What gives you hope about the future of MS research, support, or patient advocacy?
"The outlook for a person diagnosed with MS today is so different from what it was 20 years ago. Yes, significant challenges still face people with MS, but when I reflect on the speed of progress since my diagnosis, I am hopeful for what a diagnosis of MS might mean 20 years from now. It inspires me to be part of a network dedicated to improving the lives of people with MS.
I understand, however, that for those facing hard challenges in their everyday lives today, long-term progress offers little comfort. Yet, witnessing the dedication of the brilliant minds who have committed their careers to improving health outcomes for people with MS keeps me optimistic, especially knowing that initiatives such as MSIN are bringing the patient voice directly to the sharp end of MS research."