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Living With Cystinosis – Our Story So Far

In 2001 Vicky and Roy Forsyth’s 7-month-old daughter suddenly fell ill as they were moving house. What was initially thought to be a bug, persisted and was eventually diagnosed as Cystinosis, turning their world upside… 

Football Fun Day Raises Over £2,500

Last weekend in Mintlaw (North East Scotland) a football charity match and disco helped raise money for the Cystinosis Foundation UK. At the time of writing the total stands at over £2,500, with a final… 

Solve Cystinosis Wristbands

The Cystinosis Foundation UK has launched its very own wristband. The funky blue band symbolises one of the Foundation’s key aims – to help solve Cystinosis. Purchasing and wearing a wrist band helps show your… 

A Child’s Napkin Inspires a Charity

When Natalie Stack’s parents asked her to make a wish, she didn’t want to wish for anything. But she wrote on a napkin that she wanted "to have my disease go away forever". Her cry… 

Improving Cystinosis Treatments

Dr Roz Anderson, Sunderland Pharmacy School – Drug Design and Discovery, University of Sunderland. Cysteamine (now formulated and marketed as Cystagon®) is a lifesaver and its contribution to improving the prognosis and quality of life… 

Making Cysteamine Tasteless

Dr Don Cairns, Robert Gordon University I have been working on cystinosis for about five or six years, initially at the University of Sunderland and now at The Robert Gordon University (RGU) in Aberdeen, where… 

Runners Raise £1, 262 in Aberdeen 10K Run

On May 22nd 2005, six staff from Pelikan Hardcopy (based in Turriff, between Aberdeen and Inverness) took the challenge to run the Aberdeen Baker Hughes 10K race, in order to raise money for the Cystinosis… 

Longside Gala Stall Raises £91

May 22nd saw Vicky and Roy Forsyth, along with their daughter Lena, Auntie Philippa and Uncle Matt, hosting a Cystinosis Foundation UK stall at the Longside Gala, near Aberdeen. The couple had organised various activities,…