24/10/2014 06:51 BST | Updated 23/12/2014 05:59 GMT

Confessions of a Charity Leader: Big vs Small

The vast majority of smaller charities are parent led and born out of a desire to have some element of control over a situation that is often out of their control and with little hope.

In my case my young son has a currently incurable condition that gets progressively worse over time and I needed to take control of our lives and the focus of research so that I could try to save his life and the lives of so many children like him. I remember well, when two weeks after launching our charity I was requested to meet the Chief Executive of the largest and oldest charity in my space to be told,

'you're doing the wrong thing, your fragmenting the charitable space, you should just raise money for us as we know best how to spend it, you don't know what you're doing.'

I countered with 'if I truly thought you were doing a good enough job, I wouldn't be doing this'

I've had smear campaigns launched against me with scientists, press releases put out strategically to destabilise work we have been doing in the public eye, (what's that? another press release telling everyone how wonderful you are and claiming tenuous credit for work you haven't done? Do please try to surprise me )

And here in my opinion lies the reason why smaller charities are better than bigger ones.

I'm not scarred by charity politics, perhaps naively I came into charity believing that if we could all work together, collaborate honestly without agenda then surely we could get the 'job' done quicker? Surely we only have one thing to fight, we only have one competitor, and that's the disease?! Not each other, that's counterproductive, immoral and unethical.

Many bigger charities are bogged down in their own organisation, slow cumbersome, autocratic and generally overtly political and untrusting of smaller charities, with an overly active belief that because they are big they need to control the message. They are not fleet of foot, they are not for the most part entrepreneurs, but professional politicians.

We are not marred by the past, beholden to history, we are not scared for our jobs, worried about our major donors nor bothered by politics.

I never expected to be in this position, leading a charity, reading and funding research and travelling the world to meet with the most promising scientists... But I do, and am running as fast as I can, to do as much as I can, and as quickly as possible to save a generation of children and make myself redundant.

If the large charities of the world adopted an entrepreneurial view, allowed their teams autonomy to deliver and spent less time worrying about what we were doing and more time worrying about helping actually save our children rather than their jobs, perhaps then I could get my wish, a life time with my son and thankfully be out of a job too.