Case studies > Skills sharing > Fundraising strategy - The charity perspective

XLP Research Trust & Diana le Clercq

XLP is an inherited disease affecting boys and can take the lives of sufferers without access to a bone marrow transplant. Following personal experience of this rare genetic condition, David and his family set up the charity to support others and fund medical research into the condition. They wanted advice on how to make their fundraising sustainable and how to spend funds effectively.

Small Charities Coalition matched them with Diana le Clercq, former CEO at the Alexandra Rose Foundation.

Diana understood the issues of XLP not being a particularly ‘sexy’ condition and she’s helped us develop a strategy that will help us tap in to the funding market. I suppose we thought we were always going to be in competition with the big boys that have the professionals doing this, but working with Diana has shown us that actually we’re what some trust funds are looking for!

We got access to an excellent mentor who could look at us critically and see how we could take the organisation forward. Having that external input from somebody knowledgeable who has done it before, but in a slightly different context, was just fantastic. It enabled us to see beyond our own blinkered perceptions and to realise that we could take this on. Each charity has strengths and, let’s be honest, we all have weaknesses. I think working together and supporting each other through the Small Charities Coalition can actually enable us to help each other grow and make a big impact in the areas that we are passionate about.


Match completed in 2009

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