Only 9 months after I reported that our research funds appeal had raised over £200,000, it is incredibly pleasing for me to be able to report that we have now just topped the £250,000 mark – at exactly £250,345.86. The appeal originally hoped to raise just £100,000 to support research of whatever sort into better treatments or understanding of cystinosis – so to continue raising funds in this way is fantastic.
At this moment, we have already paid out over £194,000 and reserved another £56,000 for future years, with several other projects under consideration.
The first major area we have funded has been the Prodrug project at the University of Sunderland, led by Prof. Roz Anderson, which is testing new drug formulations which it is hoped will deliver the benefits of Cystagon directly to cells, so avoiding the most obvious side effects and also requiring much lower doses. We have also recently bought some equipment for Roz, a HPLC unit, which was vital for the work and replaces a very old unit that they were managing to keep working. The total funded so far or committed to Sunderland is £199,943.
The second major area we have funded is work at the Robert Gordon University in Aberdeen, led by Prof. Don Cairns. This research is looking at an alternative form of Cystagon that can be administered in different ways and we have sponsored this work, paid for a vacuum oven, a refrigerated centrifuge and supported promotion of their research. The total funded so far or committed to Aberdeen is £36,111.
On behalf of the Foundation and the Trustees, can I take this opportunity to again say a huge thank-you to everyone that has raised funds of whatever amount in whatever way – the range of projects is stunning, from sponsored bike rides, walks, marathons, golf events, quiz nights, bridge events, cake making, tea towels, knitted animals – the list is almost endless and continues to grow.
Even though we have raised this huge amount, we still know that the costs of bringing any new drug fully to market, having gained all necessary approvals, are very large. For this reason and because of how well the research projects are progressing we raised our appeal target to £300,000 last year and are already halfway to that new target thanks to all our supporters efforts.
Gareth Jackson, Treasurer, Cystinosis Foundation UK