Charity - Niemann Pick

A few months ago I made a grave error of judgement.  I found myself in Newcastle City Centre, labouring with a particularly vile hangover when I was approached by a woman in a coat so bright that it weakened my already shaky constitution.  She engaged my in a fairly one sided conversation and after a whirlwind couple of minutes I found myself leaving the scene having sent a ‘one off’ text donation in a bid to put a halt to the demise of the tiger in jungles the world over.

The orange lady’s bluster was convincing as she set about making me feel personally responsible for the dwindling numbers of these majestic beasts and for the rest of the day I wore my, ‘I’m helping to save the tigers’ sticker as a badge of valour and told anyone who would listen of my recent transition from being part of the problem, to being part of the solution. 

Bob Geldof - Charity big shot

My elation and pride were short lived, not 25 minutes had passed when the bombardment began and I received the first of around 50 calls from the, ‘save the tiger hotline’.  The man’s gracious tone, in light of my text donation did – albeit briefly – make me feel a bit like Bob Geldof after Live Aid, yet soon enough the conversation turned to commitment, (a terrifying topic for any man) as he effortlessly arrived at the words, ‘direct debit’ and ‘monthly donation’.  Needless to say I panicked and hurled my phone into the river Tyne.

The point that I am trying to make is that, for a lot of people, the only time that we will entertain the thought of giving to charity is after a skin full the night before.  This of course should not be the case and whilst saving the tigers is undoubtedly a worthwhile cause, the topic of charity as a whole is often greeted with an uneasy grimace from the general public.  A lack of information about certain charities is perhaps to blame for a lack of donations, as not all of the countless registered charities worldwide have the money to advertise on television or pay people to stand in the high street dressed in ridiculous jackets.

Two particular Charities that are lacking in any kind of exposure are the Niemann Pick Disease Group (NPDG) and the Niemann Pick Research Foundation (NPRF).  Niemann Pick is the name given to an extremely rare set of degenerative conditions for which there are currently no cure.  The NPDG and the NPRF are dwarfed in a competitive charity market by such giants as Cancer Research and Help for Heroes and aim to generate awareness of the disease and raise money in order to continue research into an effective treatment, as well as providing valuable support for those who live with the trials of the disease daily.

To put the rarity of this disease into some kind of context, imagine the start line for the London Marathon; a sea of colour, animal costumes and worried faces as the camera works its way through the crowd to capture the first regretful steps of those pushing their bodies to the limit to raise money for a number of charities.  Within those thousands of people there may be one or two running for a Niemann Pick charity, most likely those who have been directly affected by the condition.

Given my somewhat chequered history in terms of donating to charity it would be hypocritical of me to ask you to donate to this cause – that is not the point of this – the point is to raise much needed awareness of this disease.  The more people that know about it, the more that can be done to fight it.

You managed to sit through a thirty minute video about an elusive child capturer so I’d imagine that it is not beneath any of you to spare a couple of minutes to visit the website and make yourselves aware. http://www.nprf.org.uk/index.html Thank you.