Christine Lavery MBE
Group Chief Executive
Christine Lavery was appointed Chief Executive of the Society for Mucopolysaccharide and Related Diseases (MPS) in 1993. During her time at MPS she has taken the charity to new heights, employing 17 members of staff, managing a substantial research budget and a unique UK-wide advocacy service providing needs led support to nearly 1300 children and adult sufferers, their families and professionals in areas of home adaptations, special educational needs, access to new therapies, respite care, palliative care and pre- and post-bereavement support. Christine has served on the Department of health Advisory Board on Genetic Testing and is currently a patient representative on the NHS England LSD Specialised Commissioning Advisory Group.
Christine was awarded the Member of the British Empire for her services to Metabolic diseases by the Queen in the New Year’s Honours List for 2002 and at the 2006 International Symposium on Mucopolysaccharide and related diseases received ‘A Life Time Award’ from the International MPS Community. Christine continues to promote the needs of MPS, Fabry and related Lysosomal Storage Diseases across nations and working closely with the MPS International Network.
Group Finance Officer
Gina joined the Society in November 1999 working a few hours a week. This has grown as time has gone to a full time position within the Accounts and Fundraising. Like many people Gina had never heard of MPS Diseases, but quickly after meeting one or two of the cheeky little children you soon become hooked and the passion you have for the Society shines through.
Advocacy Support Team Manager
Sophie Thomas started work at the MPS Society in March 2002 as an Advocacy Support Assistant. Prior to her position at the Society she worked in the area of mental health and with adults with learning and physical disabilities. In October 2002 the Society sponsored Sophie to undertake a Diploma in Social Work and in December 2004 she became a qualified Social Worker and has used her skills and knowledge to develop her professional role within the Society. Sophie has led the Advocacy service since 2005 and is the lead person in relation to advocacy support, the Society’s childcare programmes, safeguarding and volunteer management.
PA to CEO
Since Toni’s youngest child started full time education she has been employed with various companies as Office Manager, Executive Assistant and Personal Assistant. Toni was initially employed with the MPS Society on a one year contract, covering maternity leave as PA to Christine Lavery in July 2012. Her duties include diary management, taking messages, minutes, typing up letters and e-mails, booking UK and overseas travel, creating and assisting in Power Point presentations, assisting with the set-up of patient focus groups and meetings with various specialised patient organisations and consultants, supporting grant applications, HR and Office Management.
Outside of work Toni enjoys spending time with family and walking her retired greyhounds.
Senior Advocacy Support Officer
Debbie is the advocacy support officer for MPS I, MPS IV and MPS VI. She also supports members with ML II and MSD. Debbie joined the MPS Society in January 2013 after graduating with a BSc in Social Work. She chose to follow a career in social work as she had previously worked in schools in several roles and wanted to help children and families who needed additional support and to make a positive difference to their lives. Debbie’s favourite part of the advocacy role is meeting with the families as advocacy work is so much better if there is a face to a name.
Advocacy Support Officer
Rebecca joined the Society in July 2010. Her main areas of responsibility are working with members who suffer with Fabry, MPS II, ML III/ML IV, Mannosidosis and Fucosidosis. Rebecca becomes involved with families from diagnosis, assisting within all areas of difficulties encountered dealing with the disease. Rebecca has a background of over 21 years in Local Authority and Private Sector Housing dealing with vulnerable individuals with learning disabilities, mental health and the physically disabled.
Advocacy Support Officer
Steve started his career working for people with disabilities as a support worker at the National Society for Epilepsy, where he worked for about 3.5 years. During his time at the NSE he trained as a Person Centred Planning Facilitator. In October 2004 Steve went on to join the Person Centred Planning Team at Bucks County Council. His role at Bucks was to develop planning throughout the county through the delivery training, supporting staff and professionals with implementing plans and also working with individuals and their families to develop plans. He originally joined the Society in 2006 as an advocacy support officer, predominately supporting families in the Wales, Northern Ireland and the South west of England. In 2008 he left the Society to explore other ventures, but has now returned as an advocacy support officer. Steve’s main areas of work are currently MPS III and the rarer diseases such as MLD. He is also studying towards an Open University degree in Social Work.
Advocacy Support Officer
Louise supports children and adults that have MPS III (Sanfilippo), LAL D and Gangliosidosis. Louise started her career as a nursery nurse and enjoyed working in this field for 4 years before moving into the world of social care. She then worked for a local authority for several years as a social work assistant where she qualified as a social worker.
During her social work training Louise completed a placement with a Children with Disabilities Unit and enjoyed the experience of being able to offer families a different level of support. She was amazed by how much passion and care families would give to their children, even through the tough times and knew that she would want to return to working with families that have children with disabilities. She describes her passion during work as supporting families to the best of her ability.
All Ireland Advocacy Support Officer
Alison is based in the Northern Ireland Regional Genetics Service (Belfast) – although she regularly pops over to MPS House to catch up with other members of the Advocacy and Support Team. Alison is a qualified genetic counsellor, so as part of her role she also provides genetic counselling and clinic coordination support to those affected with Mucopolysaccharide, Fabry disease and related conditions, as well as their families. Alison also works for the Gauchers Association.
For the last few years Alison has been a MPS Society and Northern Ireland representative on the Rare Disease UK (RDUK) and Northern Ireland Rare Disease Partnership (NIRDP) management committees.
In her spare time Alison enjoys running around after her lovely Beagle, Rosie!
Trust & Grant Fundraising Officer
Sue’s role involves sourcing funding for the services the MPS Society provides by writing grant applications to charitable trusts, foundations and other funders, and compiling reports to show the benefits each grant has brought to our members.
These grants go towards our Advocacy service across the UK or particular regions of the country, or towards specific aspects of our service e.g. transition work with our teenage and young adult members. Sue also seeks funding to enable the Society to run the many MPS events throughout the year. This is why it’s so important for our Trust & Grants team to receive feedback from our member families to show the grant-givers what a difference an event or support from the Advocacy team has made.
Sue has worked at the Society since 2007 in various roles, and continues to be inspired by the children and adults we support. In her occasional free time Sue enjoys pub quizzes, countryside walks and meeting up with family & friends, but currently time is taken up with the social lives of her two little girls as they seem to have parties to go to every weekend!
Within the MPS Society Martine’s role is a varied one, from Event organisation (yes it’s me that sends you the flyers) family days and weekends, conferences and the information days. Martine also arranges our Childhood Wood remembrance and planting events. Health and Safety is another part of her role, making sure that all staff are all well within the work place. Finance is an important part of the charity and she helps Gina with anything she requires to enable the smooth running of the charity.
Fundraising & Information Officer
Helen has a background in publishing, marketing and design and has previously worked for a charity producing educational research reports and products. At the MPS Society she works with the fundraising team helping our very dedicated fundraisers with information, updating social media and looking after the quarterly newsletter.
When not at the MPS Society, you’ll find Helen looking after her twin boys or playing cricket for the local women’s team.