NPUK is driven by our objectives and the needs of the patients and families we support. We would not be able to meet those needs and expectations without the amazing fundraising efforts, donations and tireless activities of our members, families and friends plus the grant funding we receive from BBC Children in Need, The Big Lottery Fund, The Hollie Foundation and many others, acknowledged here.
Please read the following summary of our financial review in conjunction with the approved Report and Financial Statements for the year ended 30 April 2017, which are available to view here.
We recognise the tremendous effort that goes into organising fund raising events and, at a time of continuing economic uncertainty, we are extremely grateful to all those who support of our work.
We restrict donations for the purpose specified and confirm that all general donations and money raised by our community during the financial year, 2016/2017, was allocated as specified, either to our Care and Support or Research Service.
The following charts show the source of funds received and expended, and how we use them to meet our aims and objectives. They also demonstrate the continuing need and importance, of your support and that of our grant providers, which is vital to the continuation of our support services.
Our total income for this financial year was £244,025, of which we received 32% in grants from the Big Lottery Fund, BBC Children in Need and the Hollie Foundation.
We received valuable financial support for our Annual Family Conference and Interactive Workshop on Niemann-Pick Diseases from the pharmaceutical industry by way of unrestricted grants (20%), enabling us to subsidise attendance for patients and their families. It is important to state that industry grant providers had no control or influence over the contents of the programme or the selection of speakers for either event. You can learn more about our flagship events here
At a time of continuing financial uncertainty, we are fortunate to have the amazing support of our members, families and friends who, through fundraising events and voluntary donations, contributed a combined 31% of our income. We are truly grateful for this support.
Investment income (3%) and gift aid (1%) were small, by comparison, and over the coming year we will review investment opportunities to ensure the best return on our investments and further encourage donors to make a Gift Aid declaration in order to maximise donations.
Expenditure for the year amounted to £358,400. This was £114,375 more than the income received and reflected the opportunity to reduce our reserves by converting the balance of an unrestricted legacy (£154,560 in 2016) into care and support for patients and families.
In 2016/2017, 46% of our expenditure was attributed to our Care and Support service, followed by 25% Research and Collaboration and 13% Information and Social Media.
– Care and support takes into account the work of our Clinical Nurse Specialist, Senior Families Advocate and Families Officer, with additional support from our Chief Executive. This includes managing the 24 hour help line, providing emotional support and help with managing disease progression, attending clinics and making home visits, giving practical advice and support for home adaptions and advocating on behalf of families on matters such as education, housing and benefits
– Research and collaboration reflects small grants to academic institutions for specific research projects, our collaborative work with the Department of Health, NHS England and the LSD Expert Advisory Group, pharmaceutical companies, research organisations and relevant patient groups to influence the future of care and treatment, clinical trial design and access to therapies plus national policy on welfare and NHS reform.
– Information and Social Media (13%) captures the costs of providing information through all channels including our website, social media platforms, newsletters and information leaflets.
– Central Office and Administration Costs (7%) reflect the expenditure associated with running the Central Office and meeting our statutory obligations, they include rent, overheads and the role of our Finance and Administration Officer.
We are fortunate to share the roles of the Social Media and Communications Officer and the Finance and Administration Officer with the International Niemann-Pick Disease Alliance (INPDA – www.inpda.org). This has the effect of sharing associated costs and reducing the cost of overheads and administration for NPUK.
Please refer to the Report and Financial Statements for the year ended 30 April 2017 for additional information about the financial accounts, reserves policy and endowment fund. If you have any questions or would like to discuss any aspect of this report, please contact our Central Office by telephone 0191 415 0693 or by email firstname.lastname@example.org.
Kim Stratton, Chief Executive Officer at Orphazyme, commented, “We are delighted with FDA’s decision to grant Breakthrough Therapy Designation to arimoclomol for NPC. Arimoclomol has been shown to have a clinically meaningful effect on disease progression in NPC that is further supported by a biomarker effect indicating an effect on the biological underpinnings of the disease and a favorable safety and tolerability profile. We are committed to bringing this product to patients as soon as possible. Breakthrough Therapy Designation is designed to expedite the development and review of products for serious diseases with the direct involvement of senior staff and we look forward to working closely with the FDA to further advance arimoclomol. Our preparations for filing in the US are underway and we are on track to submit a New Drug Application in H1 2020.”Read more