Built on a truly collaborative approach, the UK’s first virtual charity is now up and running. Chris de Winter explains how the idea took shape

Launching Children with Tumours, the UK’s first virtual charity, was certainly a challenge. And, like many simple ideas, the route wasn’t necessarily simple.

My professional involvement with charities started just over ten years ago. I have a background in communications and helping businesses expand, and was asked to help a small breast cancer charity turning over £30,000 per annum to achieve a £2m target within four years to help towards the building of Europe’s first, purpose-built breast cancer prevention centre.

Passionate beginnings

While working on the project I was struck both by the generosity of the volunteers and the courage of the people the charity was trying to help. The energy, spirit and commitment of everyone was overwhelming, and I felt truly humbled.

This was the start of my passion for working with charities. The flip side, however (there always is one!) was the shocking level of competition I encountered. An incident occurred where a piece of medical, evidence-based material became available which was commercially packaged to help fund just one charity – although its information would have benefited all with the condition. It should have been featured on all the appropriate charity websites, but instead of sharing this important research with the very people it was supposed to be helping, the charity refused to get involved with only a vague explanation as to its reasons. I found this quite unsettling.

The scientific world, on the other hand, shares everything. When there is a new discovery they all rally round and use the information for the benefit of the people who need it. Naturally the scientist who makes the discovery receives the credit, but there are no losers.

Little did I know that this incident was to become the basis of the future idea of a sharing, collaborative charity.

Life, the universe and everything

Fast forward six years and I happened to be discussing the world and the universe with my brother Kevin, thinking how wonderful it would be if we could make a difference in the charitable sector in a new way. We both had skills, expertise and contacts, but what we didn’t want to do was to duplicate anything that was already available. We wanted to do something completely new that would really make a difference.

My husband is a consultant in Medical Genetics at St Mary’s Hospital and Christie Hospital in Manchester, and through him I knew about a particular condition called neurofibromatosis (NF), in which tumours grow on nerve tissues causing a range of physical and neurological problems. There is no known cure, and the condition can seriously affect one’s quality of life, both socially and medically. Sadly there is often little compassion for these people; they can experience bullying and isolation as children, leading to a difficult life as adults.

Most people we talked to had never heard of it. And this was to be our first challenge: we wanted to create a platform to develop social awareness and to allow children with NF to interact easily and without prejudice. We agreed first off that social networking was the key to getting NF children to interact on a global scale.

At the same time, we were thinking about what our key differentiator should be. We found that while there are already a number of charities which support NF in various important ways, they tended to be more localised in their membership. We wanted to fill the gaps, and we decided that one of the best ways we could do this would be to offer a simple dovetailing service. After my experience with the medical charity, I wanted this charity to be one that collaborates with other organisations. But rather than duplicate what they are already doing, I wanted our charity to complement their work and signpost to their services as appropriate.

Struck by an idea

We discussed set up and running costs. We talked about overheads and all the other problems associated with running a charity, and out of the blue, Kevin came up with a simple solution: why don't we streamline everything and become virtual? Just like that!

Of course we thought it was a brilliant idea, but how would we make it work? After a little research we discovered that all of the essential elements that we identified which would enable us to operate effectively and efficiently were available via the web, and easily accessible for our donors, collaborating charities and beneficiaries, including:

• web-based communications;
• collaborations with other charities that are aligned to our  own;
• web conferencing to ensure all our trustees are fully up to date, conversant with and supportive of our actions;
• online and text-based giving (this allows local tailored campaigns to be aligned with our charity);
• virtual spaces (like mini-office facilities) allowing people to access our resources (including marketing literature and corporate information) and to deposit items they have created;
• discussion threads for important topics enabling people to get up to date quickly;
• contact databases allowing us to reach out to people for specific events and purposes.

These online features have supplied us with all the tools we need to raise awareness and funds, and to encourage and enable collaboration, and they were really quite simple to implement. Certainly simpler – and much more cost-effective – than setting up and running an office!

First impressions count

It’s said that you only have 15 seconds to make a good impression, and that the best ideas are simple and effective. This in mind, we thought long and hard about a catchy name which would be perceived as 'user friendly', but which would still make people clearly understand our cause. One in 500 children will develop tumours, and nearly 20 per cent of these are NF tumours. We decided Children with Tumours was a straightforward, appropriate and easily memorable name for the charity.

Further research showed that the missing areas for support in the UK are camps for NF children and money for research into helping ease the condition. This idea helped us to develop the charity strapline, “building confidence, giving hope”. We felt this demonstrated empathy for the condition, without being negative.

Open sharing

While working on our awareness building and online facilities, we heard about the work that an American society is doing for NF, The Children’s Tumour Foundation, and approached them requesting support. They liked our idea of charitable networking, and were keen for their children to interact with ours in the UK. We both hope that this collaboration will one day benefit NF children all over the world.

We are conscious that we are launching a new charity in the midst of a recession. However, we are optimistic that our charity will be successful as we can demonstrate that it is streamlined, efficient and clear in its messaging.

Already we have shared a fundraising idea with other charities in the UK and USA with the first-ever World NF Day. The goodwill that our sharing approach has created has been of huge benefit to us, our collaborating charities and ultimately our beneficiaries.

Chris de Winter is co-founder of Children with Tumours

This article first appeared in The Fundraiser magazine, Issue 18, June 2012