The Trust Fundraising Team

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With a funding commitment of £8 million to a portfolio of over 50 on-going projects, fundraising for MND research continues to be a key area of work for the MND Association. Our Trust Fundraising team blog about their role in helping to achieve a world free from MND.

So how do we fundraise for research?

At the MND Association funds come from a range of sources including trusts, major donors, legacies, individuals and our fundraising branch and group network.   Our branches and groups do a huge amount of fundraising for the Association, raising around £2.3m a year and they often generously choose to support research programmes that are close to their area of operation.

Our trust funding ranges from funders making large donations to specific research projects such as the recent support of the Garfield Weston Foundation for Dr Andrea Malaspina’s research programme looking for biomarkers in ALS, to a whole range of trust funders who make regular, small general donations towards any element of our research programme.

Raising income in this way, allows us to fund some exciting and cutting edge research in the early stages of development which could struggle to attract funding from drugs’ companies. It also allows us to fund researchers at an early stage in their career as well as more established researchers.

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Left to right: Sarah Clay, Luci Jago, Madie Collins

Trusts tend to be most interested in funding research which has potential to really progress our knowledge of MND and deliver some tangible results – not always the easiest thing to deliver when research needs time to make progress.   They’re also often interested in funding PhD studentships – funding those talented researchers at an early stage of their career who will pick up the baton and carry on the fight to defeat MND in the future.

Whilst interest in MND research is increasing, at times MND research can struggle to gain funding, as trusts like everyone else, are interested in value for money and the causes that affect the most people. They want to know that they are making the biggest difference to the largest number of people and they want to see tangible results, so sometimes we lose out to the big health issues like cancer and heart disease. However, the good news is that we do have a number of trusts giving both large and small amounts who have supported us for a number of years and we are always on the look-out for new funders.

Making the ‘ask’

For the Trusts Team, securing trust funding for medical research can be a big challenge. This has nothing to do with identifying which of the 10,000 trusts to approach, but the fact that we have to learn a whole new language! GCSE biology and chemistry have in no way equipped us with the necessary knowledge to write a technically accurate application! For many of our trusts we need to write in fairly simple lay terms, so we need to ‘translate’ a scientific description of the project to something an average person on the street would understand.

Thankfully, help is at hand. As trust fundraising is very much a collaborative process, we rely on the support of the MND Research Development team to help us understand the research and put together the very best proposals. Between us we prepare a research summary, condensing technical ideas into a 3-4 page summary. This ends up being something that’s easy to understand but at the same time conveys the potential of the research, what it could help us to achieve and why it’s really important to fund it.   The easier the concept is to grasp, and the more we can say about how the research could help develop new treatments in healthcare, the better!


Once we’ve received a grant, reporting back to trusts is really crucial for us. We need to be able to demonstrate what we have achieved with their money. If we can demonstrate positive results and show that we are a credible organisation, they’re more likely to fund us again. Some of the larger trust funders also like to visit the institutions that they’re supporting and meet the researchers – this too can help to build a good relationship and really helps to sell the research to prospective funders.

To all our funders, large and small, we are eternally thankful. Without them, working towards our vision of a world free from MND, would not be possible.

Find out more about fundraising here

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The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.