How we first began

How we first began

The Society for Mucopolysaccharide Diseases was founded in May 1982. It had only 40 families spread throughout the UK and the support provided was on a voluntary basis.

This changed and in 1983 the first ever patient meeting was held. In 1991 the MPS Society opened its first office and individual advocacy work started. In 1993 we appointed a Chief Executive and the work of the Society has grown and grown. We proudly opened MPS House, a National Information Centre for MPS and Related Diseases in January 2006. This is our history…

Timeline of the MPS Society

1982 – The MPS Society is founded. The first meeting of the MPS Management Committee is held on 13 October. The first MPS newsletter is dispatched on 31 October to 70 families and 12 hospitals.

1983 – The Society is granted trusteeship and registration as a UK national charity in May. The first 40 founding member families come together for the first weekend conference in Birmingham in September.

1984 – The Society produces its first formal annual report and statement of accounts.

1985 – The MPS Society first starts funding basic research. The MPS Society facilitates the first cervical infusion for Morquio disease in England using the halo method and bone grafts from the legs. The surgery is carried out at University College Hospital involving British and American doctors. The MPS Society receives a grant to establish the first MPS registry collecting incidence data and epidemiological data for the UK and Europe.

1986 – Whilst the newsletter continues to be produced by a member family in a domestic environment, the first tentative embrace of new technology is made by the production of the newsletter on a home computer linked to the printer purchased by the Society in 1985.

1987 – At the Society’s annual family weekend conference at the Posthouse Hotel, Heathrow, bloods from over 50 MPS II Hunter families were taken to enable research being conducted by Prof John Hopwood from the Women’s and Children’s Hospital, Adelaide, Australia to be carried out.

1988 – The MPS Society announces four year funding of Dr Ed Wraith’s post as Consultant Paediatrician specialising in MPS at Royal Manchester Children’s Hospital (RMCH). In May the first MPS family day in the Republic of Ireland is held.

1989 – The first disease booklets are published by the MPS Society. Prof John Hopwood isolates the gene for MPS II Hunter disease making the path clear for potential treatment.

1990 – The first international symposium on MPS diseases is hosted by the MPS Society at the University of Manchester. It brings together over 150 families and 300 professionals to share experiences from all parts of the world.

1992 – The Society celebrates its tenth anniversary year with a Reception at the House of Commons in June.

1993 – Inaugural planting takes place of 150 saplings from the ancient Sherwood Oak planted by MPS families. The Rt Hon Michael Howard, then Secretary of State for the Environment, plants the first oak in memory of Simon Lavery. Christine Lavery is appointed by Trustees to the post of Chief Executive.

1995 – The number of newly diagnosed families seeking support from the MPS Society doubles.

1997 – Following three year funding to the RMCH and Christie Hospital Manchester the first gene therapy trial for MPS I Hurler disease is carried out at RMCH.

1998 – The MPS Office moves to Woodside Road, Amersham from Hill Avenue. In December the Rt Hon Gordon Brown MP as Chancellor of the Exchequer hosts a children’s party at No. 11 Downing Street.

1999 – Significant research in ERT has led to clinical trials for Fabry and MPS I disease. The MPS Society receives its largest grant yet to fund the MPS advocacy service for the coming three years.

2000 – The MPS Society celebrates its 18th birthday.

2001 – Enzyme Replacement Therapy is approved in Europe for Fabry and the Fabry Patient Support Group is amalgamated with the MPS Society.

2002 – Christine Lavery is awarded the MBE for services to metabolic diseases. The MPS Society jointly hosts with the French patient association, VML, the International Symposium on Mucopolysaccharide Diseases in Paris, France.

2003 – The Society celebrates the start of its 21st birthday year with a tea party at the House of Commons. Enzyme Replacement Therapy for MPS I Hurler Scheie and Scheie disease is launched.

2004 – The MPS celebrates the close of its 21st anniversary celebrations with a Tea Party at Downing Street. Lysosomal storage disorders including all MPS and related diseases receive National Specialist Commissioning designation by the Minister of Health. No more post-code prescribing” or legal challenges in England.

2005 – Friends of MPS is launched. Launch of Naglazyme ERT for MPS VI. The MPS Society awards its largest programme grant in its history, £308,000, to fund a research fellow at the University of Manchester to develop the MPS Stem Cell Group working towards therapeutic outcomes for MPS.

2006 – The MPS Society moves into MPS House. Elaprase ERT for MPS II is launched.

2007 – The MPS Society celebrates its 25th anniversary. The first MPS Awareness Day is launched on 15 May. The Society achieves NHS funded ERT for three children in Scotland.

2009 – A Phase I/II clinical trial for ERT in MPS IVA disease is started at three specialist centres in England. The MPS Society becomes a charity registered in Scotland.

2010 – A Phase I/II Intrathecal ERT Clinical Trial is started at the Royal Manchester Children’s Hospital. The MPS Society hosted a two day international Expert Meeting on MPS III, Sanfilippo disease. An extension clinical trial with patients from the MPS IVA Phase I/II Clinical Trial started in September.

2011 – Whilst remaining a registered charity, the Society changed its unincorporated charitable status to a charitable company limited by guarantee.

2012 – In May 2012 the MPS Society celebrated its 30th Anniversary year with a reception at the Palace of Westminster hosted by the Rt. Hon. Jeremy Hunt MP currently Secretary of State for Health, and attended by members of the Society, representative from the LSD medical and nursing fraternity, the pharmaceutical industry as well as supporters, volunteers, donors and fundraisers. 2012 saw over 30 UK children and adults with MPSIVA recruited to a clinical trial for Morquio disease at seven LSD expert clinical centres across England. With over 170 patients worldwide recruited this is the biggest clinical trial yet for an ultra-orphan disease.

2013 – In October 2013 the MPS Society moved its Fundraising and Communications teams into the newly extended ground floor of MPS House.

41 years after Dr William Sly described MPS VII, the first MPS VII patient received enzyme replacment therapy on a Phase I/II clinical trial at the Manchester Children’s Hospital.

2014 – On 11th August 2014 Jack Baird, aged 4 years, became the first child recruited to a new clinical trial to study the effectiveness of Genistein Aglycone at high dose for Sanfilippo disease, which was funded by the MPS Society.

In September 2014 the MPS Advocacy team and CEO participated in a ground-breaking two day meeting to understand the clinical and social challenges of adults living with MPS.

2015 – The MPS Society lead a campaign to politically challenge failed processes for evaluating and approving high cost drugs for ultra-rare diseases – in our case Vimizim for MPS IVA. In a landmark victory on the 16th December 2015 the we jointly signed a Managed Access Agreement (MAA) for Vimizim from January 2016 for up to a period of 5 years.