In 2004, aged 22, and a year into his first ‘proper’ job, our CEO and co-founder George Pepper was diagnosed with multiple sclerosis. He experienced an aggressive start to MS, with seven relapses in the first 18 months.
“I remember wanting to talk to people like me and felt a disconnect with my friends and family. After looking for MS support in person and online, I couldn’t find others my age who I could relate to.”
- George
When George couldn’t find an online community for MSers like him, he decided to take matters into his own hands, founding Shift.ms.
45% of our Board of Trustees are living with MS or are a loved one of someone living with MS, ensuring that ultimate organisational governance is held by the community we serve. A further 30% have worked in the MS space directly.
Our trustees monitor organisational performance, provide executive leadership, and manage long term risk through the lens of lived experience. When recruiting for our Board, we prioritise people with lived experience alongside functional expertise (e.g., finance, legal, tech).
Product roadmaps are informed by community feedback loops, annual survey insights, and co-design workshops.
Co-production is an ever-evolving and growing part of our work. We’re constantly looking for more people to inform our outputs, so we regularly recruit new members to ensure we reflect their lived experiences.
This group of MSers act as our lead digital architects and help us decide what we should build next. Their involvement ranges from one-on-one remote interviews, joining focus groups and workshops to completing diary studies and surveys.
A recent example of this collaborative approach is our video podcast series ‘Re:Work’, where participants helped to shape the interview questions and creative direction of the series.
Our QA Testing Volunteers dive into real-life scenarios and test our app features, ensuring it stays as delightful and effective as ever. By prioritising user experience and offering feedback, they play a crucial part in enhancing our app's functionality and usability.
The group exists to ensure that content published across our social media channels and app is relevant, accurate, inclusive, accessible, and genuinely shaped by lived experience. They provide ideas, insight, and feedback to help us create content that better reflects the needs, priorities, and diversity of the MS community.
First and foremost, Shift.ms exists so MSers can “Get support.” Whether it’s through 1-1 connection or the wider community, MSers finding the social and emotional support they need is our top priority.
Our community is an ecosystem and inspiring members to “Give support” to each other through the app or our social platforms ensures Shift.ms remains a vibrant, diverse and relevant destination for MSers. This can extend to making Shift.ms a stronger service offering through co-production, volunteering their skills and expertise and/or through fundraising and giving donations.
Last year, 283 MSers volunteered across Shift.ms, moderating our community, testing new digital features, welcoming new members, creating content and helping shape our services. Every volunteer is recruited from within our community because firsthand experience of living with MS is the most valuable qualification they can bring. Recognising the unpredictable nature of MS, we build flexibility into every volunteer role so people can contribute in ways that fit around fluctuating symptoms, fatigue and changing health.
“After fourteen years I didn’t think buddying would have an impact on my relationship with my own MS, my own body, but I was wrong. Buddying has been a cathartic and ‘full circle’ experience, healing old wounds and giving me a sense of empowerment and accomplishment. My number one aim when I began buddying was showing those newly diagnosed that their life isn’t over; that there is still so much happiness and joy and adventure to be had, and in determining to show that to others I remind myself of it every day.”
- Evie, 33, Buddy
If you're interested in being involved, email our Community Manager eleanor@shift.ms
