FSHD UK

I began my career in banking and shortly left that to do an MSC in Information Management and there-after started a career in IT to lead business & IT projects; managing a large portfolio of projects and as well as spending a short period on services management (the other arm of project management) for a global FMCG company.

I have a wealth of experience in managing projects/ working with teams to deliver the desired outcomes. I have skills in engaging and inspiring people in small or large groups to work towards a common goal and purpose.

I started FSHD UK in July 2021 with the idea of bringing together key stakeholders – patients, carers, families, clinicians, researchers and other interested national and international parties to collaborate and coordinate in creating a joined up FSHD Community. There is now a group of over 30 in this team. This vision is starting to become a reality as we start to create small patient communities at the current 6 hospital sites that are part of our group. We have shown we can drive things to action and enlighten the lives of those who had no hope for any FSHD activity a couple of years ago - to now spear heading natural history studies and creating communities across the country.

We have shown we can achieve results and have put the UK on the roadmap for more FSHD investment and involvement by external stakeholders. This is for a patient community that has been under-represented and has had little or no hope for years.

Since 2022 the UK now has ReSolve, MOVE and MOVE+ about to start – these are natural history studies. In addition, there are two clinical trial sites with hopefully more on the way.

I am a committee member of the FSHD World Alliance (since 2021) and also the patient representative on the International Standards of Care (to be launched in 2024) for FSHD. I have recently become a patient representative for the TreatNMD TGDOC FSHD Sub-Group. I look forward to drive our FSHD agenda forward.