Founded in 1982 by Christine Lavery, we are the only registered charity in the UK which focusses on MPS (Mucopolysaccharide), Fabry and related disorders.
About Christine Lavery
Christine was an exceptional individual who led a remarkable life. She founded the MPS Society in May 1982 after the loss of her son who had MPS II Hunter.
Robin and I were about three weeks off our 11th wedding anniversary when our eldest son, died from Hunter’s Syndrome aged 7 and half years. Our son's death was very sudden and left us both feeling numbed.
She then embarked on an incredible journey establishing the MPS Society which spanned over nearly 40 years. Reflecting on her own experiences of family life with a rare disease, Christine describes how the idea of a charity for people in similar circumstances originated.
Perhaps it was the isolation we felt, in that for years I was unable to locate another family with a Hunter’s Syndrome child that prompted me to start the Society of Mucopolysaccahride Diseases.
Creating a community
Being very much a family-oriented person, it was important to Christine that the MPS Society provided a similar environment for its members right form the very beginning. Thus, when she started to link up with other MPS families across the UK, it wasn’t surprising that her initiative was met with much enthusiasm. Only one year later, the MPS Society was granted trusteeship and registered as a UK charity. When Christine was appointed CEO in 1993, family support was very much at the forefront of her efforts. “Since taking up the post, family support has been uppermost in my mind, and I am pleased to say I have already been to visit some of our newly diagnosed families”, she remarked at the time.
Investing in change
Not only was Christine on a mission to establish the MPS Society, but she also worked as National Development Officer at Contact a Family where she set up over 300 patient support groups for a wide range of specific diseases and wrote the first edition of the ‘Contact a Family Directory of Rare Diseases and Support Networks’. “We did not expect to make such headway in attracting funds towards further research”, Christine commented.
It is thanks to her determination that we are now on the forefront of exciting and ground-breaking research projects, which have helped to change the landscape of the rare disease community in the UK as well as globally.
Together we are stronger
Under her leadership, the charity also formed strong bonds with other organisations around the world, including in Australia, South Africa and the USA. She was a founding member of MPS Europe and the International MPS Network and travelled around the world to represent the MPS Society at many conferences. Furthermore, Christine provided advice to The European Medicines Agency and NICE and was a member of the MPS International Network and Fabry International Network (FIN) of which she became president in 2013.
A lasting legacy
It was Christine's willpower and tenacity which shaped the MPS Society into the charity it is today. Her determination was infectious, and she was admired by many people. Perhaps her greatest legacy is being a strong role model who helped others in need, even in the face of adversity. She will always remain a shining light here at the MPS Society.
There are so many wonderful memories of Christine that those of you who have met her will treasure. Read our chair Judith’s and trustee Wilma’s tributes to remember Christine and find out more about the Christine Memorial Fund.