Author: David McNiven

This blog piece was written by our Trust and Grants Fundraiser Sarah Kernahan. Sarah has been working behind the scenes in the fundraising team for over 4 years so we asked her to share what she’s been doing to raise thousands of pounds year in year out for families living with HD.

When you mention fundraising people usually think about events, sponsored challenges and all the weird and wonderful things people do to raise money. People are less familiar with Trust Fundraising, which is my role within the fundraising team. … so what exactly is Trust Fundraising?

Trust Fundraising refers to the process of asking for support from trusts and foundations that are empowered to make grants for charitable purposes. There are around 10,000 trusts and foundations in the UK, all operating to distribute funds to charitable causes amounting to about £2 billion annually. That’s a big pot of money! These trusts are extremely varied, from individual or family-based trusts which were set up to reflect the founders interests, to the more well know trusts such as Comic Relief and Children in Need.

However with over 24,000 charities registered in Scotland alone, the competition for the same pot of money is huge! One of our biggest challenges when up against the competition is fundraising for a cause that people know little about or have never heard of.

How do we stand out from the crowd? 

Writing charitable trust applications is all about communicating who we are, what we do and why we exist. It’s about telling our story; demonstrating how HD impacts people’s lives and the practical things our HD Specialists, Youth Advisors and Financial Wellbeing Officers do on a daily basis that really make a difference to the people we support. Using case studies in applications brings these issues to life; a real story is the most powerful way to engage with someone who knows little about the condition.

One of the most recent successes with charitable trusts was securing funding for the next 3 years for our Financial Wellbeing Service (FWS). The FWS was set up following a 3 year grant from the Big Lottery Fund and as this funding was coming to an end in 2018 the challenge was to find continuation funding to keep the service going.

The funding secured for the Financial Wellbeing Service for the next 3 years came from three main funders; The Henry Smith Charity, The Robertson Trust and the R S Macdonald Trust. The Robertson Trust and the R S Macdonald Trust have both previously supported our work and we have a good relationship with them. Securing funding from ‘cold’ trusts is much more difficult, cold trusts are trusts that we do not have a connection with and have never supported us. On average just 10% of applications to cold trusts are successful. So how do we increase these odds?

In June this year we were successful in receiving support from the Henry Smith Charity, a cold trust, securing a total of £178,000 over 3 years. The Henry Smith Charity is amongst the largest independent grant makers in the UK, distributing over £30 million in 2017, so we were delighted to be able to secure this support!

Being able to demonstrate both the need for the service and the positive impact the FWS has had on the lives of people living with HD in its first 3 years of operation enabled us to secure this funding. The application included information from an independent evaluation which provided strong evidence of what the service has achieved for families;

To date the Financial Wellbeing Service has generated an additional £2,173,345 of income for individuals and families living with HD.

It’s clear the service has had a significant impact on clients’ wellbeing with 76% reporting reduced levels of financial stress. Clients could feel that the service enabled them to cope more easily with day to day tasks, and had a positive impact on their mental health.

Being able to demonstrate the difference we make to people’s lives is our biggest strength. ‘The application made a good case for the need for this specific service and explained the challenges faced by your clients well’ Feedback received from The Henry Smith Charity.

The principles of trust fundraising are the same as community and individual fundraising – it is about engaging your audience, inspiring them and demonstrating that your cause is a worthy one.

Could you help to improve our funding applications?

It would be fantastic to be able to use more case studies within our funding applications. If you would be willing to share your story and experiences of using SHA’s services then please do get in touch.

It doesn’t sound like much, does it? In fact, a cup of coffee from Starbucks costs more. But that’s the amount that people living below the poverty line in Scotland have to feed themselves, day in and day out. One million people in Scotland were considered to be living in poverty in 2017. As 33% of HD families in Scotland are in poverty, that means that hundreds of men, women and children are also living like this.

Like many people, I knew that Huntington’s disease had an economic impact on families, but didn’t think about it too deeply. I knew that the Financial Wellbeing Service  was doing great work, and that it was making a difference, but it was all a bit hypothetical for me. Then in January 2018 I saw a newspaper article which mentioned the £2 per day figure. I was sitting in a café at the time, with a jacket potato and a hot chocolate in front of me. I’d just spent £6 on my lunch, without really thinking about it. Suddenly, it all felt very real.

It was after  that I decided to try and see what I could make for that kind of money. The first thing I realised, of course, is that if I was living below the poverty line I wouldn’t have a full £2 to spend just on dinner – I’d need some of that money for other things. However, after a bit of research, I discovered that a big bag of porridge oats from Tesco costs just 70p and provides breakfast for multiple people for a week. Thank you, porridge! Assuming that meant I was only spending 5p per day on a filling breakfast, that left me with 90p per person for lunch and £1 per person for dinner.

This was going to be difficult, but possible. Of course, trying to feed myself and my husband on this kind of budget wasn’t just going to cost me cash. It was also going to cost me a lot more in the way of emotional labour than usual. I couldn’t just sling together a collection of ingredients, hope for the best, and call for a takeout if it went wrong. Instead I had to be very creative with very little, and I had to get it right first time. If you’re on this kind of budget, you have no safety net – if you burn your dinner, that means you go hungry.

Checking out prices in the supermarket, it also looked like I probably needed to go veggie for the week. Meat is not cheap! I did remember that as a poor student the only meat I could afford was a tin of cheap hot dogs, but to my shock, even those were 85p for a can of eight! I managed to shop around and find a replacement tin of hot dogs for 50p, but that would still be half my budget for this meal and I didn’t think those hot dogs would taste great by themselves. I sadly put them back down.

It also occurred to me as I was wandering around the supermarket that I was also pretty lucky to live in Glasgow, with a big Tesco within walking distance, which has a wide range of options at a reasonable price. If I was living in the village I was brought up in, I wouldn’t have access to any supermarkets, only a corner shop with a limited number of food options, and higher prices. Getting to a supermarket would cost me money in bus fares, which would eat into my limited funds.

But back to dinner! After some thought, I decided to go for egg fried rice and vegetables for the evening. For that, I needed half an onion (5p), 100g rice (10p), half a cabbage (10p), 1 carrot (5p), 1 egg (18p – a box of 8 eggs cost £1.40 and I’d use the rest later!), and a stock cube which I had in my cupboard already, but would have cost me only 5p or so (a box of 12 stock cubes costs about 70p). I also needed a spoonful of oil and a pinch of salt – probably another 10p worth of food. That all added up to 63 pence for a meal for two people.

I fried the veg first, starting with the onion and carrots for about five minutes or so, and then added the cabbage for another two minutes. Once my veg was looking soft, I chucked in the rice and stock cube, letting that heat up over the next two minutes. While that was cooking, I whisked the egg and then added that to the pan for a minute more, stirring constantly while I did so. When it was done, I seasoned with a bit of salt.

It didn’t taste too bad. Dinner for two, for under 35p per person.

The next day, I calculated how much I would normally spend on dinner and was shocked to discover that my dinner the night before (fish, mash and veg) had cost me nearly £3 per person. I’d spent almost ten times as much on my dinner as someone living below the poverty line in Scotland might.

I made a donation to SHA that week and decided to spend the rest of the week trying to cook for less, and appreciated the Financial Wellbeing Service a bit more. Of course, when you’re living in poverty, it isn’t just food that’s a worry – it’s bus fares, new shoes, or paying the gas bill – and the Financial Wellbeing Service can help with all of that as well.

Scottish Huntington’s Association provides financial advice and support to HD families completely free of charge but it costs the charity money to keep the service going. My week of living carefully, however, had given me an idea.

You may have already heard of some of these challenges – the Live Below the Line Challenge or the Hunger Challenge. I wanted to encourage SHA supporters to do something similar – to try and live on a limited budget for a week, and think a bit about the economic hardship which is an often underestimated impact of HD. But I didn’t just want to raise awareness. I wanted to make a difference.

My week of tight budgeting had meant that I had the money to donate to SHA, and the money to make a difference through my donation. I know that those small donations add up – for every person who makes the commitment to live frugally for a week and is able to donate £40 as a result, our Financial Wellbeing Advisors can afford to visit a new family and help them with their finances. And when our Advisors get involved, they can normally leave every family they work with better off to the tune of an average £3,000.

That’s when I got the idea for the Poverty Pledge. Find out more on our website if you fancy.

https://hdscotland.org/poverty-pledge/