After nearly a decade at the helm of the MPS Society, our Group CEO, Bob Stevens, has announced that he will take a step back from his role at the end of this year.
Over the past 12 months, Bob has faced significant personal challenges. Following a diagnosis of prostate cancer, he and his family also experienced the devastating and unexpected loss of his eldest son, Oliver, in December 2025. For Bob this is the right time to focus on his family.
Sophie Thomas will take on the role as interim CEO of the MPS Society from 10 August 2026 and will remain in post during the recruitment process for a permanent CEO. Bob will remain as Group CEO during this time.
Once a new CEO is in place, Bob will take on the role of Managing Director of Rare Disease Research Partners (RDRP). This position will enable him to continue with important areas of work, while also allowing him to spend more time with his family.
Being the Group CEO of the MPS Society and RDRP has been the privilege of a lifetime.
Bob shared this statement:
“Being the Group CEO of the MPS Society and RDRP has been the privilege of a lifetime, but a good leader knows when it is time to lead and when it is time to step aside. After the past 12 months I simply do not have the resilience and physical energy to carry out my roles to the standard I would expect of myself. Instead I will be concentrating on key priorities, including the continued development of Rare Disease Research Partners, my role as Co-Chair of the Newborn Screening Collaborative and supporting the Lysosomal Storage Disease (LSD) Collaborative in whatever capacity I can.
“I have every confidence that the MPS Society will continue to go from strength to strength and the next phase will be an exciting journey full of possibilities to improve the lives of the communities we support. Sophie Thomas is a highly respected and experienced leader and I know she will allow a seamless transition and guide the charity during this period of change.”
Sophie Thomas said:
“Having worked at the MPS Society for 24 years, I am honoured and privileged to take on the role of Interim CEO. I am grateful for the trust that has been placed in me and for the opportunity to lead an organisation that has been such an important part of my life for so many years. I am committed to supporting our staff and community during this transition and to building on the Society's legacy and strong foundations as we look to the future. I look forward to working together to support our community and continue making a meaningful difference.”
We are immensely grateful to Bob for his outstanding leadership, dedication and vision over the past decade. His commitment has helped shape both the MPS Society and Rare Disease Research Partners, leaving a lasting legacy that will continue to benefit the rare disease community for years to come.
We look forward to supporting Sophie in her role as Interim CEO and to working with Bob as he continues to lead the growth and impact of Rare Disease Research Partners.
