Participating Member Charity Testimonials
“One of our key strategic aims is to undertake, encourage, fund and communicate research into the causes of, cures for and management of epilepsy and into the social and psychological effects of the condition. The HRCI-HRB Joint Funding Scheme has been a critical component of our success over the past decade in meeting this objective. Our Research Funding Scheme was set up in 2010 to provide epilepsy researchers in Ireland with an avenue to access funding for world-class research. Since then, over half of the proposals we have funded have been under the HRCI-HRB Joint Funding Scheme. Including HRB contributions, we have invested over €1m in local epilepsy research since 2010. Being a member of HRCI and having access to the JFS has been the most important driving force behind this success.
Simply put, without the JFS we would not have the resources to fund research of a significant scale. Being an active participant in the JFS also encouraged us to develop a professional and intensive research review process and establish a research review committee. These steps have helped ensure that the highest quality proposals are funded and that maximum impact is extracted from our fundraised investment. In addition to a number of important genetic and gene activity discoveries and a regular stream of publications in leading journals, the impact of research funded under the JFS has also extended into service developments and shaping advocacy objectives. It has also helped attract young researchers to the field and played a role in attracting larger national and international grants for Irish epilepsy research. Finally, as a small organisation without an in-house research function, the JFS also gives us invaluable access to the partnership’s grant management functions which are undertaken by the HRB.
Our currently active JFS projects, investigating biomarkers for the ketogenic diet in epilepsy and examining the relationship between autoimmune epilepsy and the microbiome both present exciting opportunities in understanding epilepsy and improving treatments and we are looking forward to the findings these studies will produce.”
Peter Murphy, Chief Executive, Epilepsy Ireland
“We have participated in the HRCI-HRB Joint Funding scheme in the past two cycles and it has made a tremendous contribution to our mission, to save more lives from cancer. Through the scheme we have been able to ask the innovative Irish cancer research community to come forward with their best ideas and approaches to improve survival in the hardest to treat cancers. We are 100% funded by the public and because of this scheme have been able to significantly boost the investment we are able to make in patient focused cancer research. We have also found that participating in the review process and the development of the PPI elements in each cycle has been a very informative process for our charity as we evolve our own structures over time. We would advise any other HRCI partners to participate in the scheme if they can. We have had 4 projects funded in the last 2 cycles and hope that will continue long into the future”
Orla Dolan, Breakthrough Cancer Research
“Cystinosis Ireland is a small, all-volunteer charity. Our main aim is to raise money to fund research into cystinosis, an ultra-rare disease. We have participated in the Joint Funding Scheme since the start, and it has enabled us to be involved in funding research that would otherwise have been outside of our funding capabilities. Cystinosis is a life-threatening, chronic disease that has no cure. Our charity has funding priorities and areas of interest where we want to see research conducted. The nature of the Joint Funding Scheme, where the charity puts out the call for research, carries out all administration and peer review – in our case on a completely voluntary basis – and decides which projects go forward to the HRB review panel, means that those directly affected by cystinosis are part of that decision-making process. It means that the research conducted is the kind of research that will make a difference to lives – both in the short term and in the long term. The Joint Funding Scheme has helped put Cystinosis Ireland on the map in the cystinosis world and has put cystinosis on the world map for rare diseases.”
Anne Marie O’Dowd, Director and Research Co-ordinator, Cystinosis Ireland
