The Niemann-Pick Disease Group (UK) is a charitable organisation. It offers support and information to families affected by any type of Niemann-Pick disease and to associated professionals.

The organisation was formed in 1991, as the 'Niemann-Pick Support Group', by parents, Susan and Jim Green, following the diagnosis of Niemann-Pick Disease Type C in two of their three children. Contact a Family (www.cafamily.org.uk) provided initial support and a small starter grant. In 1993, the Research Trust for Metabolic Diseases in Children (now Climb) (www.climb.org.uk) also gave their support to help the group form a Management Committee. Jim Green was elected as the first Chairman of the newly formed 'RTMDC Niemann-Pick Group'. The Group flourished under the umbrella of the RTMDC and in 1996 was granted charitable status as an independent charity 'The Niemann-Pick Disease Group (UK)'.

THE BOARD OF TRUSTEES

The NPDG (UK) is managed by a Board of Trustees consisting of parents of affected children and their friends. The Trustees volunteer their time to achieve the Aims of the Group.

The Group also has a number of distinguished Patrons who lend their support to our work.

The office of the NPDG (UK) is based at 11 Greenwood Close, The Pastures, Fatfield, Washington, NE38 8LR. A 24-hour contact number is also situated here. Our National Development Manager is Toni Mathieson and we have an Administrative Officer, Sue Lowe.

Medical Adviser to the Group is Dr Ed Wraith, Consultant Paediatrician, Royal Manchester Children's Hospital and Director of the Willink Biochemical Genetics Unit.

• to provide a support and advice service to families affected by NPD
• to disseminate and share relevant information
• to provide support for a national clinical centre for Niemann-Pick Disease
• to promote national and international collaboration in the field of NPD
• to promote relevant research into Niemann-Pick Disease and its treatment

Members of the NPDG (UK) have assisted in the formation of other Niemann-Pick Disease Groups in the USA, Germany, France, Italy and Spain.

In addition to giving support via the NPDG (UK) office we publish various information leaflets, a Family Directory, a Care Manual, and a regular Newsletter. 1,000 copies of the Newsletter are circulated to families, friends, funders and professionals.

The Group funds the salary of a Clinical Nurse Specialist for Niemann-Pick Disease, Jackie Imrie and a Clinical Research Nurse, Liz Jacklin.  Jackie and Liz work alongside Dr Ed Wraith at the Royal Manchester Children's Hospital.

An Annual Conference is held as well as a number of Clinic Days per year at the Willink Biochemical Genetics Unit, Royal Manchester Children's Hospital.

FUNDING

The Group relies solely on membership fees, voluntary donations, fundraising events and charitable grants for its income.

In 1999 we successfully applied for a grant from Children in Need to fund the salary of a Specialist Niemann-Pick Nurse- now our Clinical Nurse Specialist

In 2000 we received funding from the National Lottery Charities Board to fund research at Addenbrookes Hospital, Cambridge into the possibility of gene replacement therapy for Niemann-Pick Disease Type C.

Also in 2000 the Alzheimer's Society gave us our first partnership grant for Core Funding to enable us to employ a part-time administrative assistant to aid the work of the Group. This initially covered set up costs, running costs and salary for one year. The Alzheimer's Society very kindly agreed to continue this funding until 2005.

In 2003 the NPDG (UK) received core funding from the Department of Health to employ a Development Manager to take forward the work of the Group; the funding was for a three year period.

In 2005 we received continuation funding from Children in Need, to part fund the post of our Clinical Nurse Specialist.

In 2007 we successfully secured grant funding from The Foyle Foundation, to part fund the posts of Clinical Nurse Specialist, National Development Manager and Administration Officer.

In 2008 and 2009 the travel expenses of the Clinical Nurse Specialist will be part funded by a grant from The Roald Dahl Foundation.

As you can see, NPDG (UK) has enjoyed some success through community and informal fundraising and we have a proven track record of partnership funding with other grant-making trusts. An element of work for the National Development Manager, in partnership with the Board of Trustees’, is the development of a succession and forward strategy, as well as a robust funding strategy, which will include the diversifying of income and increasing of informal fund-raising. If in the furure there continues to be a need for support towards costs, then it will be the role of the National Development Manager to seek new grant funding, from other sources, to reflect the needs of the organisation at that time.

We have come a long way since the Group began, but we still have a distance to travel before a cure for Niemann-Pick Disease will be found. We have made many friends along the way and treasure them all!