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                Setting yourself up for fundraising success

Funding is of course central to running rare disease charities and being able to execute projects and provide the best support possible to rare disease communities. Many rare disease organisations depend on community fundraising to run their projects and sustain them. However, due to covid-19, community fundraising has effectively stopped which has left many of the organisations and charities that we support with gaps in funding that need to be filled.

With this in mind, from the 4th to the 6th of May 2020, we ran a three day online workshop focusing on the theme of ‘setting yourself up for fundraising success,’ with the ultimate aim of providing expertise in how to transition patient group funding away from community fundraising to applying to grants and foundations and accessing corporate funding. This was also a new experience for the Findacure team as it was our first time running a workshop online and via Zoom, so we definitely learned lots of new things alongside the attendees! The sessions were accompanied by homework which was set for the attendees, with the aim of making the lessons learnt in the sessions practical and applicable to patient organisations in reality.

The main topics covered were:

Day one: Identifying fundraising opportunities

Day two: Writing a successful fundraising application

Day three: Navigating corporate grants and sponsorship

Laura Thompson-Harper, Fundraising manager, Findacure

On day one, we focused on the topic of identifying fundraising manager and first off our fundraising manager Laura, took to the virtual stage to cover this topic. Laura offered attendees a concise introduction to what trusts and foundations are, the different types of funding offered and how to look for it, how to best communicate with funders and some sources of Covid-19 specific funding. Laura provided attendees with key insight into the fact that it is helpful to think outside of the box when searching for funding as this will help to identify a bigger range of funding routes. She also emphasised how important preparation and research is when it comes to funding applications to ensure that the attendees would not waste their time on applications that would prove unsuitable in the end.  This was helpful in clarifying what can be a confusing topic and emphasising that communicating well and thinking outside the box when searching for funding sources is a good approach to take to be more successful.

View Lauras slides here

Rick Thompson, CEO, Findacure

For the session second of day one, our CEO Rick talked us through what patient organisations can do to prepare their organisation for applications and communicate projects in a way that appeals funders. He reassured attendees that although funding can be a difficult thing to secure, there are strategies that will secure success when practiced and honed well. Rick also provided guidance on how to categorise budgets for different projects, which was an element that some attendees said they found particularly daunting. We ended the session with a breakout session where attendees had a chance to chat and engage with each through discussing their own projects that they want to secure funding for and what they have achieved so far. These breakout sessions only allowed for the sharing of expertise and experience and it was really insightful for the Findacure team to see what funding efforts are being tried by our community.

View Rick’s slides here

Lindsay Harrod, the FSI

On day two we focused on the topic of ‘writing a succesful funding application’ and were joined by Lindsay Harrod from the FSI. Lindsays session was very insightful as she provided some top tips for great applications that she has learned throughout her career, what was particularly good was how Lindsay broke down her guidance and showed attendees that there are actually some really simple steps that can be taken to make applications stronger. Her session was very interactive and meant that attendees could work on constructing an application throughout the session and could feed this back to her to actually improve their approach throughout the session. One of the key thigs Lindsay stressed was how important it is for applicants to put themselves in the shoes of the funders to really assess what funders are looking for and then cultivate this in their own applications. She also introduced the value of impact measurement and how important it is for patient organisations to demonstrate the value of their projects in order to secure funding.

View Lindsay’s slides here 


Rick Thompson, CEO, Findacure

On our third and final day, Rick started off the workshop by outlining what corporate funding is and what forms it is available in and why accessing it can help in funding patient organisations. He emphasised the fact that many companies now have charitable responsibilities built into their ethos through corporate social responsibility and through the desire to be perceived in a positive way. This can have a big benefit on patient organisations as through this they can tap into others resource that companies are offering such as skills, expertise and resources. Rick identified the three major routes that can be used to access corporate funds, these being corporate grants, event sponsorship and active engagment. He also signposted attendees to potential places they can look to source this support and funding. He emphasised that making the most of personal networks and connections is key and that real value can be found when relationships with corporate partners are sustained and nurtured. Rick’s talk was really great at breaking the fear of working with corporates that many organisations experience as he outlined some pragmatic and practiced approaches that work to forge initial connections and build collaborations.

View Rick’s slides here

Shirlene Badger, Patient advocacy, Illumina

To round off the final day of our online workshop we were joined by Shirlene Badger, a patient advocacy expert at Illumina. Shirlene has a wealth of experience to share from her lomg career in both academia and now in industry and she gave our attendees some really valuable insights into what she has learnt over the years. Shirlene highligted how industry has changed over recent years to have a much larger emphasis on ethical considerations regarding patient collaboration and involvement and how patient advocacy impacts every aspect of Illumina’s work. This was particularly interesting as it counteracted some of the reputation of industry by highlighting that patient insight is actually central to the work that she does. One of the key things that Shirlene highlighted is how important patient organisations stories are and she encouraged attendees to give the ‘Why’ of their organisations the value and attention it deserves. Shirlene also provided plenty of pragmatic guidance and emphasised that working with industry can be different to applying for grants and foundations due to different financial categorisations and often longer timeframes.

View Shirlene’s slides here


Setting yourself up for fundraising success

by Philippa Norman time to read: 7 min