As many of you will now know, Bob is beginning to stand down from the MPS Society to focus solely on Rare Disease Research Partners and I have taken on the role of Interim CEO. I wanted to take this opportunity to share a little more about myself, my journey with the MPS Society and why I feel so committed to this next chapter.
Growing with the organisation
My journey with the MPS Society began on 25 March 2002, almost entirely by chance, when I joined as an office assistant.
Over the years, my role has grown and changed alongside the organisation itself. I became part of the advocacy support team, progressed into advocacy support roles and went on to lead and manage the team for many years. In 2020, I became Senior Head of Patient Services and Clinical Liaisons, allowing me to broaden my work across the MPS Society and strengthen the connections between patients, families, healthcare professionals and our partners.
Keeping community at the heart
After nearly 25 years with the charity, many people within our community know me well.
I have had the privilege of supporting families through some of the most difficult and important moments in their lives.
I have worked alongside adults, children, parents, carers, clinicians, researchers, industry partners and many others who share a commitment to improving outcomes for people affected by MPS and related conditions.
At the same time, I know there will be newer members of our community, professionals and colleagues who may not yet know me or have had the opportunity to work with me directly. I look forward to changing that over the coming months. Whether you are an individual member, family member, healthcare professional, researcher, partner organisation or industry colleague, I would love to hear from you.
It has been an honour to support our community and to witness the progress that has taken place in treatment, care, diagnosis, awareness and research.
I have seen first-hand the difference that strong advocacy, collaboration and the patient voice makes. I have also seen the challenges that remain, from access to services and treatments to the practical, emotional and social impact of living with a rare disease.
Moving forward
Taking on the Interim CEO role is a responsibility I do not underestimate.
This is an important period of transition for the MPS Society and my immediate priority is to provide continuity, stability and clear leadership while keeping our community at the centre of everything we do.
I am looking forward to building on the strong foundations already in place.
For those who already know me, thank you for your ongoing support, encouragement and trust over many years. For those I have not yet had the opportunity to work with closely, I would really welcome the chance to connect.
Please do contact me through the Society’s various channels, by email, at meetings and events. I look forward to speaking with many of you over the next few months.
