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The importance of fundraising
Sounds like a silly title – the importance of fundraising. Obviously, fundraising is important. Without money, there’s not that much we can do.
But fundraising plays a purpose for rare disease patient groups (and most other charities) that goes beyond raising funds. It’s about raising awareness, telling others about the issue you’re focusing on, using your supporters to spread the word.
This is something the AKU Society is increasingly trying to do. This Sunday, we have 10 runners taking part in the London 10k, a major sporting event with more than 25,000 runners participating and more than 40,000 spectators. It takes place in the middle of London and should be a fantastic event.
We got the idea from other rare disease patient groups. They encouraged us to register with the London 10k. One of these rare disease patient groups raises £25,000 a year thanks to the London 10k – that’s a substantial amount of funding that can be used as the charity wants in order to further its mission. I don’t think we’ll get anywhere near that amount this year, but it’s a good target to aim for in future years.
We do most of our fundraising for these events via our JustGiving page at www.justgiving.com/alkaptonuria. If you scroll down, you’ll see that there’s a whole bunch of supporters raising funds for us.
And if you’d like to sponsor me for the London 10k, you can donate on my justgiving fundraising page at: www.justgiving.com/Nicklondon10k. So dig deep!
The challenge of fundraising
Three years of recession have made the fundraising environment particularly tough. We just got a rejection from a funder today for an excellent AKU research project. The problem was that they received 40 applications, but were only giving out three grants. That’s less than 10% success rate… And they used to be a soft funder – one with a high rate of success. We got another rejection earlier this week from a trust – no explanation apart from the fact they are oversubscribed.
So what are we going to do?
Step up our fundraising.
That’s right, rather than feel all sorry for ourselves, we’re going to increase our attempts at raising funds for our work. It’s the only way to do it. So we’re going to keep on writing the applications, learning from our mistakes, and hopefully, we’ll bite soon.
In fact, there was a ray of hope a couple of weeks ago when a British trust gave us £9,000 towards our AKU research and said that they would give more if they were happy with the results. We’re also making good headway with a pharma company for a small grant.
Nevertheless, it got me thinking about how we can mobilise our patients and their networks to raise funds. And I think this is something all rare disease groups should be doing. So here’s our plan:
1. We’re going to ring up two AKU patients every day for the next two months. We’re going to update them on our work, find out how they’re doing, and then ask them if they’d like to join our fundraising efforts. For instance, we have places for the London 10k run in July, which is an excellent opportunity to get people to fundraise. I’m sure some patients will have friends and family who’d be interested.
2. We’re going to aim to get 10 people to raise £1,000. That’s £10,000. Not a huge amount, but it can go a long way in a small organisation like ours.
3. After the event, we’re going to ask those 10 people each to recruit three more people for the next event. That will enable us to grow our numbers year on year and turn this into a more sizable fundraising movement.
Why don’t you do the same for your patient group? Let me know how it goes.
The joy of sponsored runs…
I did a 10k Military Run on Saturday to raise funds for the AKU Society. Have a look at these pics…
It wasn’t actually as bad as it looks, thanks to a bit of training beforehand. And, believe it or not, it was fun. Overall, I managed to raise just over £1,300, which isn’t bad.
The challenge for rare disease groups is that we’re often asking for money from the same people: our friends and family. They’re very generous if you approach them once or twice a year – as I do. However, if you need to raise more funds, then you’ll need to widen your pool of people who do sponsored events for you. This year, we’ve had two such events so far: a parachute jump by an AKU supporter, which raised £1,500, and my 10k run. It would be great if we could have someone doing something every week. If we had an average fundraising of £1,000/event, that would be £52,000/year.
So that’s what we’re going to work on: getting more friends, family and other supporters to do more sponsored events. It’s fun, it raises awareness about the disease, and it brings in crucial funding.
EU Health Programme calls for proposals for rare diseases
The European Agency for Health and Consumers (EAHC, part of the EU Health Programme) has just announced its 2011 call for proposals. It includes funding for projects for rare disease information networks across Europe.
The deadline is 27 May 2011.
If you’re a rare disease patient group and you work across Europe, then you should definitely be applying for funding. Have a look at the information here:
http://ec.europa.eu/eahc/health/projects.html
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Fundraising for rare disease patient groups
If you’re a newly started rare disease patient group, one of your first aims will be to raise funds for patient support and medical research. Here’s a brief outline of three of the main areas of fundraising. I’ll go into other areas and provide more detail in later posts.
1. Fundraising from friends and family: This is how most of us start. I can remember back in 2004 running a series of half marathons to raise funds for the early days of the AKU Society. I set up an account for the AKU Society with www.justgiving.com (there’s also Virgin Giving at uk.virginmoneygiving.com/giving or the Transnational Giving Network for those wanting to give cross-nationally in Europe: www.givingineurope.org).
I emailed all my friends, family, distant relatives, childhood friends who I could think of. My first run raised £5,000, my second run £2,500, my third run £1,200, then down to less than £1,000 each time.
That’s the challenge with fundraising from friends and family: if you ask too often, compassion fatigue settles in, even though they may be incredibly supportive of your cause. Hence the secret is to recruit other fundraisers who will do sponsored events for your rare disease group. The more people doing sponsored runs, parachute jumps, etc, the better. In fact, you can get it all organised by Skyline Events: they organise the parachute jumps and fundraising activities for you. You just supply the people.
2. Fundraising events: a step up is organising fundraising events such as dinners, balls, lunches, etc. Our family organised a big fundraising dinner in St Albans two years ago. It was a huge success, raising more than £7,000 in one night from 200 guests. There was a big dinner, a bar, a casino and other activities to encourage people to donate to AKU. Everyone had a fantastic time. The challenge was in the amount of work required to organise the event. It’s not something you can repeat too often, but it’s well worth it when you do organise it.
3. Trusts and foundations: There are thousands of grant-giving trusts across Europe and North America, many of which give to patient groups and medical research. The challenge is convincing them that your projects are more worthwhile than the tens of thousands of competing projects.
Before approaching a trust, do your research. In the UK, you can sign up to www.trustfunding.org.uk, which is a database of all the published trusts in the UK, with their areas of giving.
The best way to approach a trust is through personal contacts. Have a look at their list of trustees. Do you or your fellow volunteers know any of the trustees? Do your medical advisors know them? Can you fix up a phone call or a meeting? Can you go to events where trusts will be represented so that you can meet them?
Very few trusts give specifically to rare diseases. The Foyle Foundation used to (we got our first medical research grant from them, which launched our basic science research programme in Liverpool with the recruitment of an amazing PhD student called Adam Taylor), but no longer does, unfortunately (although if your income is below £100,000 per year, you can still apply to the Foyle Foundation’s small grants scheme).
In France, Fondation Groupama focuses on supporting rare disease patient groups. In Switzerland, Dr Olivier Menzel has just launched the Black Swan Foundation, focusing exclusively on funding research for rare diseases. Otherwise, you should try applying to trusts that focus on helping causes that can’t get support from elsewhere.
Anyway, that’s it for today. In future posts I’ll look at raising funds from the rich, corporates and the general public.
Raising funds for rare diseases
As most rare disease groups will tell you, raising funds for our work isn’t easy, even at the best of times. In the middle of an economic recession, it’s downright tough. Nevertheless, I’m going to start sharing here on a regular basis some of the funders we have found that may support rare diseases.
I’m going to start this week with the Big Lottery Fund and Jeans for Genes:
Big Lottery Fund: the unsung hero of the rare disease movement, the Big Lottery Fund has supported many rare disease groups, such as the AKU Society and the Genetic Alliance UK, and is one of the few funders who truly appears to understand the marginalisation, isolation and challenges facing rare disease patients. Small groups can apply to Awards for All, which provides grants of up to £10,000 for one-off activities.
You can also apply to the Reaching Communities scheme, which provides up to £500,000 for multi-year projects. We received funding from Reaching Communities for our AKU Information Centre from 2007 to 2010. For scientific research, the Big Lottery Fund has a research grant scheme, although this is now closed and uncertainty remains around any future funding here. The Lottery has a very clear guidelines and a robust selection process – one of the best and most progressive funders out there.
Jeans for Genes: A traditional funder of rare genetic diseases, although highly competitive and with limited funding amounts (£25,000 per project and only a few projects approved each year). Nevertheless, Jeans for Genes is a strong brand and one worth being associated with if you get the chance.
We're joining forces with Partnership for Cures
Here’s some good news for today:
AKU Society joins forces with Partnership for Cures to find AKU treatments
http://www.4cures.org/home
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http://www.justgiving.com/alkaptonuria
This is me
There are 7,000 rare diseases. AKU is just one of them, although it has a place in the history books for being the first metabolic disease ever identified, in 1901. This blog provides advice, tips and suggestions for the wider rare disease movement based on our experience on AKU. Please read on and don't hesitate to comment.
