Case Study of the AKU Society: Trusts, the EC and Crowdfunding Oliver Timmis Head of Projects, AKU Society oliver@akusociety.org
Awards for All Charity - workshops BLF - research programme Research - development of AKU model Childwick Trust Research - observational study Genetic Alliance UK Charity - route maps Rosetrees Trust Research - joint destruction in AKU The Monument Trust Charity - website development HQIP Charity - online registry National Specialised Charity - patient identification and support Services Research - national assessment centre BLF - Reaching Charity - develop online communities Communities Charity - patient identification and support EU FP7 Research - European clinical trials Jeans for Genes Charity - workshops
Preparation 1) Identify the problem and solution 2) Identify the trust
Trusts 1) What are they looking for? 2) Past grants, read the guidelines
Application 1) Read carefully and answer the questions 2) Proofread and proofread
Example Trust BLF Reaching Communities Flexible deadlines, grants between £10,000 - £500,000 • People have better chances in life, with better access to training and development to improve their life skills • Stronger communities, with more active citizens, working together to tackle their problems • Improved rural and urban environments, which communities are better able to access and enjoy • Healthier and more active people and communities
DESCRIPTION What does your project involve? Is it based on existing work? PREPARATION What problems will your project solve? How do you know there is a need? How does your project meet that need? IMPACT Who benefits from the project? What difference will it make? Key Outcomes. Can your organisation deliver? MANAGEMENT What’s the budget?
Research Applications
General tips • Established research team • Work with university departments • Show that you are useful – researchers need you • Plan ahead
Trusts Specific: – Rosetrees – Arthritis Research UK Top three in UK: – Wellcome Trust – MRC (Medical Research Council) – NIHR (National Institute of Health Research) European Commission
Example Grant DevelopAKUre, co-funded by the European Commission
DevelopAKUre Consortium Vital to identify the right partners: ideally you should already have a working relationship
Example Grant DevelopAKUre, co-funded by the European Commission Two stage process: Rigid structure: 1. Scientific and Technical Quality Started in May 2011 2. Implementation and Partners Approval Feb 2012 3. Impact Start Nov 2012 4. Ethics Funding Jan 2013 5. Consideration of Gender aspects 6. Bibliography Stage 2: 125 pages
Feedback S/T quality: “ The overall project is presented very clearly, in a systematic manner. The description perfectly addressed all relevant aspects of the call.” Implementation: “ The project structure is well designed and appropriate. The parties involved are highly skilled, providing an excellent mix of scientific, strategic and operational skills.” Impact: “ The plans for dissemination were extremely well prepared. The IP Policy was seen as exemplary.” Evaluation: 15/15
Crowdfunding Case Study – Help Us Cure Black Bone Disease, AKU Society
50 days, 1,469 donors online gave $98,685 + offline donations = total $121,012
1) Crowdfunding is a marathon
2) Crowdfunding relies on social media
3) The key is a personal appeal
4) A video is vital
5) But Perks Are Essential
“These trials have given us great hope. This treatment could completely change our lives. We’re that one step closer to a cure .” - Belgium AKU patient
Thank You! Contact me: oliver@akusociety.org Twitter: @OliverTimmis
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