One of the primary aims of the Cystinosis Foundation UK is to aid research, in order to help develop new medicines and improve existing ones. Professor Don Cairns, of the Robert Gordon University in Aberdeen, has been involved in research into Cystinosis related medicines for many years, and in 2005 the Foundation were able to provide funds for a new oven to assist Professor Cairns and his team with their work.
We are now pleased, following successful periods of fundraising, that the Foundation have been able to further support Professor Cairns and his team by providing a donation to allow for the purchase of a refrigerated centrifuge. And earlier this month, 6-year-old Cystinosis sufferer, Lena Forysth, and her parents, Vicky and Roy, were invited to visit Professor Cairns at the university to see first hand how their work is progressing. A visit that was reported by local press, This Is North Scotland.
We hope to report in more detail soon on the research at Robert Gordons, but we understand that it is progressing well.
"There are other centrifuges in RGU but the project were having to share these with other departments, now they have their own dedicated machine it should allow work to progress more efficiently", says Roy, a member of the Foundation’s committee.
"The work there continues to progress well, with some on-going testing on cystinotic cells of some adapted cystamine strains."
Part of the research is concerned with trying to make a ‘chemical camouflage’ to mask the taste of cystamine, which is hard to administer, particularly to younger Cystinosis suffers. Roy goes on to say:
"This was the worst task by far – having to physically restrain your child and force her to take this foul-smelling medication day and night."
We wish Professor Cairns and his team the very best in all the research and hope that our donation has a positive impact on their work. And we look forward to bringing you research updates in the future.