The Niemann Pick Research Foundation was established in 2011 to raise funds to support research in to finding a treatment for NPC.
The Trustees aim was to make a difference to the current generation of NPC patients. After 12 successful and fulfilling years the charity will close at the end of 2023.
NPC is a very rare, progressive, neurodegenerative disease with no current cure. It is sometimes referred to as childhood Alzheimer’s.
The charity was founded by David and Sue French whose son, William, was diagnosed with NPC when he was 9 months old.
William sadly passed away at 22 years of age.
After attending school for 3 years, William’s developmental delays made main-stream schooling difficult and so we decided to home-school him for several years until this also became impossible. NPC progressively robbed him of the ability to walk, talk and feed himself. As a young boy William would laugh and smile all the time. NPC took these away from him too. Despite the many challenges an NPC diagnosis brings, William packed a lot into his 22 years, including being the inspiration for so many charity fundraisers. We hope that through the charity, William will have a left a legacy for future NPC generations.
We have set up an award in William’s name to fund young scientists coming into the NPC field. If you would like to contribute to this and help continue to fund research into this ultra-rare disease, we have set up a tribute page to William on Much Loved where donations can be made to the charity.
A special thank you
David and Sue would like to express their sincere thanks to the trustees who served on the Board of the charity (pictured below in a final meeting of the charity). They very generously provided their time and experience to the charity for many years, helped organise (and participated in) numerous fundraising events.
The trustees would like to thank everyone who supported the charity over the years. In particular we thank the dedicated scientists striving to find a treatment for NPC; Adam Cunliffe for reviewing the annual accounts; the Scientific Advisory Board for their expert scientific input; Richard Bacon for being the charity Patron; numerous friends for taking part in some memorable fundraising events and finally everyone who bought tickets, bid for auction items, or donated by sponsorship.
There were too many events over the years to remember them all here. Highlights would include the two glitzy Balls at the Connaught Rooms, several golf days, the Land’s End to John O’Groats cycle ride and the JOGLE run in the opposite direction.
We produced two videos featuring William for the Balls and these videos can be viewed below.
Making a difference
During the 12 years the charity operated, total income exceeded £875,000, net funds raised was about £780,000 and 27 research grants were dispensed to 6 institutions including University of Oxford, Cardiff University, University of Sussex, De Montfort University Leicester and UCL.
If you would like further information on NPC including how to receive support, please visit https://www.npuk.org
David and Sue French