Christine was an exceptional individual who led a remarkable and wonderful life. In May 1982 Christine founded the MPS Society, embarking on an incredible journey, which spanned nearly 40 years. The idea of the MPS Society began after Christine and her husband, Robin, experienced life with a child who had MPS.
In 1982, in her first secretary report, Christine explained the reasons that motivated her to set up a charity for the MPS community, “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.”
Through challenging times and dealing with grief, Christine began to reflect on her time with a son who had a rare disease: “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.”
Christine was very much a family orientated person and this lovely quality was embedded into the charity, right from the very start. So it isn’t too surprising to hear that the response to setting up the charity was overwhelming and met with much enthusiasm. In 1983 the Society was granted trusteeship and registered as a UK national charity. Over the next few months, Christine started to link up with other MPS families in the UK for mutual support and sharing some much needed information. From these very small beginnings the Society for Mucopolysaccharide Diseases (MPS Society) was born.
Not only was Christine on a mission to establish the MPS Society, she also worked as National Development Officer at Contact a Family, a national UK charity. During this period Christine worked with parents and carers to set up over 300 patient support groups for a wide range of specific diseases. In 1991 Christine with the help of a researcher wrote the first edition of the Contact a Family Directory of Rare Diseases and Support Networks which is now available on the internet.
Planting seeds of hope
Although the charity was initially set up to be a support network, being an initial contact for families, Christine never envisaged what was going to happen next, saying, “We did not expect to make such headway in attracting funds towards further research.” By the end of December 1982, the charity was awarded a remarkable sum of money, £2,000.
The award was a catalyst, to further understand more about MPS diseases and related lysosomal diseases and through Christine’s determination, over the last 40 years the MPS Society are proud to have funded and to have been at the forefront of exciting and groundbreaking research projects, which have helped to change the landscape of the rare disease community, not only in the UK, but globally as well. All these years later we are still going strong planting seeds of hope with more research projects.
Take a look at other research projects the MPS Society has been involved in and helped to fund.
We just recently launched the Christine Memorial Fund on 21 November, Christine’s birthday, to honour her memory and dedication to research and improving the lives of our community. The fund will go towards supporting a university student to undertake a summer vacation scheme on a research project that will study an MPS or related disease.
Find out more about the Christine Memorial Fund.
A new chapter begins
Roll on a few years later to 1993 when a new chapter in Christine’s life begins, when Christine Lavery is appointed Chief Executive of the Society for Mucopolysaccharide Diseases.
Christine’s first aim in her new role was to focus on something that has been embedded in the charity ever since - family support, as Christine says in the Spring 1993 magazine, “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.”
Under Christine’s impeccable leadership, she set sail steering a ship onto a path of success, collaborating with other organisations around the world.
Christine globe trotted around the world
Christine wasn’t just set on remaining on her own turf, she had big plans to forge out strong relationships with other countries, globetrotting around the world, making connections firstly with Australia, South Africa and the United States of America.
In 1988 the first MPS family day was held in the Republic of Ireland and in 1994 the MPS Society were delighted that the Department of Health and Social Services in Belfast, Northern Ireland recognised the work of the MPS Society by making a grant of £3,000 towards family support in the Province.
Christine didn’t stop there as she became the main instigator in branching out and establishing other successful patient organisations, being a founding member of MPS Europe and the International MPS Network, which works to share best practices, improve access to world-class information and trials and fundamentally, building a global community of support. As well as this Christine travelled the world attending many conferences from different continents.
Christine also began providing advice to The European Medicines Agency and NICE and was a member of the MPS International Network and Fabry International Network (FIN). In 2013 Christine became President of FIN.
Memories of Christine
Christine's determination and tenacity have helped shaped the charity to what it has become today. Christine had many lovely qualities. Her infectious determination rubbed off on many people, but perhaps her greatest legacy was who she was, a role model to others, to help others in need, in the face of adversity with her kind and caring heart. She will always be a shining light, which through her incredible legacy, will never be extinguished!