The NPDG (UK) relies solely on membership fees, voluntary donations, fundraising events and charitable grants for its income.  The Group has enjoyed some success through community and informal fundraising and we have a proven track record of partnership funding with other grant-making trusts:

 

In 2010 we were delighted to announce that our work is to be supported by a grant from the Big Lottery Fund Reaching Communities Programme over the next three years.  We would like to thank the Big Lottery Fund for choosing to support our organisation with the grant, for the amount of £172,601, which has given us the fantastic opportunity to enhance our current support service with a new project, entitled the ‘Family Care and Interactive Support Service’.  

 

 

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 and in 2005 and 2009 we were delighted to receive continuation funding to part fund this post.

 

 

In 2009 we were delighted to receive a grant from the Big Lottery Awards for All scheme, to enable us to complete a project that will raise awareness of Niemann-pick diseases and provide information about the condition to families and health and social care professionals.

 

Also in 2009, the work of our Clinical Research Nurse was supported by a grant from the London Law Trust.

 

In 2008 and 2009 the travel expenses of the Clinical Nurse Specialist will be part funded by a grant from The Roald Dahl Foundation. This will be the second time that the Group has received grant funding from The Roald Dahl Foundation and we are very grateful for their continued support.  The grant is specifically to support the travel costs of our Clinical Nurse Specialist, totalling £5000 over two years.

 

 

In 2007 we successfully secured grant funding from The Foyle Foundation, to part fund the posts of Clinical Nurse Specialist, Executive Officer and Administration Officer. This is an important contribution to the funding of the above posts and the support of The Foyle Foundation is greatly appreciated. 

 

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

 

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 Administration Officer 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.

 

An element of work for the Executive Director, in partnership with the Board of Trustees’, is the development of a succession and forward strategy, as well as a robust funding strategy. It is the role of the Executive Director to seek new grant funding, from grant making trusts and other sources, to reflect the needs of the organisation at that time.