SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

£200,000 Target Reached!

It is with great pleasure that I can report that our research funds appeal has now raised over £200,000 since it was launched – in fact precisely £206,605.66. The appeal initially had an optimistic hope to be able to raise £100,000 to support research – either into better treatments or understanding of Cystinosis – so to now break this £200,000 barrier is unbelievable.

The other good news is that from this current total, we have already paid out over £164,000 and committed another £25,000 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 Dr Roz Anderson. This involves testing new drug formulations with the aim of delivering the benefits of Cystagon directly to cells, whilst avoiding the most obvious side effects and also requiring much lower doses. We have also recently bought some equipment for Dr Anderson, a HPLC unit, which was vital for their work and replaces a very old unit that they were only just managing to keep working. The total funded so far or committed to the University of Sunderland is £153,182.

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 the Robert Gordon University is £36,111.

On behalf of the Foundation and the Trustees, I’d like to take this opportunity to say a huge thank you to everyone who has raised funds for whatever amount and in whatever way. The range of projects is stunning – from sponsored bike rides, marathons, golf events, quiz nights, bridge events, cake making, tea towels, knitted animals – the list is almost endless.

Even though we have achieved this amazing target, we still know that the costs of bringing any new drug fully to market, and of gaining all necessary approvals, are huge. For this reason, and because of how well the research projects are progressing, we are raising our appeal target to £300,000 and of course hope that you will all continue to support us in this new goal.

Gareth Jackson
Treasurer, Cystinosis Foundation UK

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