An Update From Our New Chairman

There have been some changes behind the scenes at the Cystinosis Foundation UK that I would like to announce, which have been brought about by the retirement of our former treasurer, Paul Doyle.

Paul was a fundamental part of the Foundation from its inception and the knowledge and experience he brought to it has helped to put us on the stable footing we have today. Paul didn’t have the reasons to be involved in this that the rest of us do, so it is commendable that he was prepared to give up his time for this and stuck at it for so long.

I have moved into the position of Chairman, Gareth Jackson has taken on the role of Treasurer and John Terry remains as our Secretary.

I am also delighted to announce the arrival of two new trustees: David Benford and Neil Sugden have joined us to strengthen the ranks. David is going to focus on publicity for the Foundation whilst Neil is going to address fundraising. These appointments were as the result of our invitation for applicants to be trustees. Hopefully, some up-to-date profiles and photos will be available on the website soon.

On the 14th February all the trustees met up for a committee meeting at David Benford’s house near Derby. This was a rare occasion for us all to meet in person, but it proved extremely worthwhile to bring all of our new team together from the various corners of the country.

The immediate and long term future for the Foundation is looking very promising and we are involved in extremely significant projects within the Cystinotic community. These include the research at Sunderland University into prodrug developments, the work at The Robert Gordon University in Aberdeen on novel ways to administer the main medication required by Cystinotics, and also the new national cohort study that is hoping to involve all adult sufferers. All of these projects have the potential to progress our understanding of Cystinosis and the effectiveness of required medications considerably. We have committed a large amount of funding for these projects over the coming years, all monies we currently have available.

The cohort study will only work if the adult patients give it their support, and the Foundation is funding a research assistant to help speed up this work. All the medical details will be held by the research team. This study is a long term project and will benefit sufferers in the future by helping medical professionals understand the condition and its effects better. It will allow future research to be directed more effectively towards the required areas in order to provide the greatest benefits for the most people.

We are aware of other potential projects that we believe may approach us for funding in the future, so our fundraising target for 2009 of raising £50,000 is extremely important. I know how hard it is to raise money but any small amount will make a difference and it is surprising how quickly these amounts add up. The support the Foundation has had to date has been fantastic and we do amazingly well for such a small organisation. The running costs for the Foundation are minimal, with all those involved contributing their time voluntarily; we do make every penny we receive count.

One thing that is very easy for us all to do is use the facility we have on the website. This can be used when doing your shopping online. It costs the Foundation nothing, costs the user nothing, but means that the Foundation receives a donation from the online shop when a purchase is made. We don’t see any details of the person making the purchase, only the donation from the retailer. So please try to remember to use this each time you shop online, it is really easy to do. Please do give it a try!

I would also encourage anyone with anything they want to bring up with the Foundation to get in touch with us. If anyone wants to share information, experiences, fundraising ideas, please let us know.

Thank you to everyone who has supported the Foundation to date, and I look forward to serving on the Foundation’s committee in my new role.


Roy Forsyth, Dad of Lena (8) with Cystinosis.

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