Important Announcement by the Society For Mucopolysaccharide Disease

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Important Announcement by the Society For Mucopolysaccharide Disease

As recently reported on the MPS Society website, Christine Lavery, our Group Chief Executive, sadly passed away on Tuesday 19th December 2017, in hospital, surrounded by her family following a brief illness.

Christine tirelessly championed the MPS Society from its very conception in the early 1980s up until her untimely death. She was a formidable lady who cared passionately for every MPS Society member both past and present.  Her efforts saw her work with patients, families and professionals extend all over the world as she dedicated her life to improving the knowledge, advocacy support and clinical outlook for patients with MPS and related diseases.  We are all deeply saddened at the tragic loss of her life.

In recent years recognising the need for a smooth transition from herself to her eventual successor Christine had requested that the Board of Trustees commence succession planning. With this in mind, Bob Stevens was appointed as Head of Operations & Governance in May 2017 and the process began.  Bob has many years of experience within the charity sector.  As well as being a Trustee of the MPS Society for over ten years and Chairman of MPS Commercial, Bob also gained valuable experience as the Managing Director of a Charity based in Surrey, supporting people of all ages with learning difficulties and complex needs. On a personal level Bob and his wife Claire have two sons with MPSII.

It was anticipated that Christine would step down from her current role towards the end of 2018 or early 2019 and that Bob would take up the reigns as CEO of both the MPS Society and MPS Commercial in due course.

In fact only days before her untimely death Christine had confirmed to me her delight in Bob’s suitability to ‘take the reigns’. The Board of Trustees have therefore now acted decisively and quickly in implementing not only what we believe were Christine’s wishes, but also the unanimous wishes of the board of trustees.

So with immediate effect we have appointed Bob Stevens as the new Group CEO.

On behalf of the MPS Society and MPS Commercial I wish Bob every success in his new role.  We all recognise there will never be another Christine Lavery but both the MPS Society and MPS Commercial are confident that Bob and the team can build upon and continue Christine’s legacy. We have already been inundated with offers of help and support from professionals, the pharma industry and the whole LSD community – this is most welcome and will serve to help Bob’s progress towards his aim of continued growth and elevated status of the MPS Society.

We are very grateful to you all for this support during what is inevitably a challenging time and look forward to working together in Christine’s name for a brighter future for the community we all serve.


Paul Moody
Chairman of the Board of Trustees.