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We hear from Judith Evans


All good things come to an end…so the saying goes…..and earlier this year James Garthwaite told the Board that he wished to stand down from the Chair of the MPS Society for personal reasons although he would still continue as a trustee. James duly stood down at our September meeting and I was elected Chair to continue the excellent work he has done in conjunction with the Board and operational team over probably the four most challenging years in the Society’s 40 year history.

I was born and brought up on a farm in East Anglia but moved to the west of Scotland in 1981 when my husband’s job was relocated. Our association with the Society began when our daughter, Joanne, was diagnosed with MPSIV Morquio in 1989, when she was three years old.

I was first invited to join the Board as a trustee in 2000, serving for 16 years and, for several years as honorary treasurer. Along with James, I was invited to re-join the Board in 2018, serving as Vice Chair to James as Chair.

James has presided over a hugely challenging few years, through which, both staff and trustees have worked tirelessly, initially to steady the MPS Society ship, following Christine’s untimely death in December 2017, then managing the challenges arising from the Covid 19 pandemic, through to overseeing a robust governance structure and then creating a sustainable platform for our future.

This has involved many hours of meetings, phone calls, drafting and redrafting of documents to ensure all protocols, policies and procedures were in place but, at the same time, ensuring we didn’t stray from our core purpose of putting the MPS families and patients and their needs at the heart of everything we do.

Covid continues to be an unwelcome influence and has necessitated new working practices and being flexible and innovative in maintaining contact with our members though regular phone and Zoom calls. This year we have been able to resume face-to-face events, all of which have been enthusiastically supported by families, all eager to reconnect after the isolation of lockdown.

The Advocacy Team continue to support our members with many topics including housing needs, educational issues, problems with Social Services, medical queries, transition from child to adult services and psychological support.

Outside influences continue to impact on the Society including reduced funding available from pharma and other previous generous funding bodies. There are considerable issues with NHS, NICE, Government, etc. all of which involve many hours of work for the Senior Leadership Team.

This year and probably the next few years will be a period of unprecedented uncertainty within the economy and real challenges in the Rare Disease arena both in the UK and internationally not seen over the last 40 years. With this in mind, we look to maintain the same excellent and comprehensive service our members have come to expect whilst being able to take advantage of all new opportunities which may arise.

As I settle into my new role, one of my first tasks must be to recruit a couple of new trustees to the Board from amongst our membership. We are a friendly and hard working team but it is hugely rewarding and……we like to socialise too!! If you would like to know more, do please get in touch.

Judith Evans

Chair of MPS Trustees

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