Niemann-Pick UK (NPUK) is a small charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases. 

The funds they raise provide much needed awareness, practical and emotional support, advice & information to those affected, their families & the professionals involved in their care, from diagnosis and beyond. They also facilitate research into potential therapies.

They are a small charity, the work they do is funded entirely through fundraising activities and successful grant applications.

Their strength, therefore, comes from the dedication of their much valued families, members, benefactors and volunteers who work with tremendous effort and loyalty in support of the charity.

Niemann-Pick Type C Disease (NPC) is a rare and fatal genetic disease affecting 1 in 100,000 live births globally. Currently there are only 50 children & 50 adults in the U.K. with it. NPC affects every cell in the body due to the defect in the NPC protein which is responsible for cholesterol processing in the cell. Because of the NPC defect in this disease, cholesterol accumulates abnormally in every cell in the body, causing symptoms in the brain, liver, spleen, lung and other organs. This cruel disease is one of four main diseases that cause Childhood Dementia.

Blair was diagnosed with NPC, this very cruel rare disease, 18 months ago.  It was a totally devastating diagnosis for us to receive, but we are being positive & strong!!  Blair does not know he has NPC & is full of confidence & thinks that he is just like all his friends.  Each & every one of us in life is different & Blair is just Blair.  His is very lucky to have amazing friends, school mates & teachers, who accept him for who he is & give him fantastic love & support. We want to protect him from this for as long as we can.  We pray & have hope & faith that a cure will soon be found!!

NPUK have given us amazing much needed support since his diagnosis.

Every £1 makes a difference, so your help is greatly appreciated :-)

Thankyou so much for your support

Lots of love, Julie, Keith & Blair xxx