About the NPRF

The NPRF is a trust and is managed by its trustees.

The NPRF’s charitable objects are as follows;

“To relieve sickness and to promote and protect good health by funding research and by the provision of grants for the public benefit into Niemann-Pick Type C and the means to control, manage and cure it and to disseminate the useful results to the public.”

Governing principles

  • To be open and transparent about what the charity is doing and how it is spending its money.
  • To cooperate with all other organisations and individuals striving for the same goal, an effective treatment for NPC.
  • To judge our success by what we achieve.
  • To raise funds responsibly in support of sensible short and medium term objectives.  Fundraising in itself is a secondary objective and ancillary to the primary objective.


Sue French is mainly responsible for the day-to-day activities of the charity.

Jeremy Tipper has been appointed chair for an initial period.       

Periodic updates

In addition to posting occasional stories and updates on Facebook, the NPRF operates an email mailing list for periodic updates. We aim to publish an update approximately every three months.  Please see the links to the left to the updates issued on 15th June 2011, 5th September 2011 and the 2011 Newsletter, which was sent out in December 2011.

Quarterly financial summary

The NPRF posts summary quarterly financials on the website showing amounts raised by way of donations, costs of fundraising and overhead expenses.  All numbers provided are draft and subject to subsequent revision.