Stephanie Cherqui, PhD Scripps Research Institute, San Diago, USA. Cystinosis is a metabolic hereditary disease characterized by the accumulation of cystine in most of the patient’s tissues leading to multiple organ dysfunction. The curative treatment… Treatment of Cystinosis Using Bone Marrow Stem Cell
We are pleased to announce that our fundraising total is now up to £162,147.10! This has been raised through a variety of events including two cycles – Ted and Phil Beckwith completed the Tour De… Fundraising Update
Issue 17 (September 2009) of our newsletter has recently been released and includes stories covering fund raising, research, experiences of dealing with Cystinosis and a retrospective of the first 10 years of the Foundation. Thank… Newsletter 2009 Issue 17
Website editor, Matt Blackham, talks about his recent cycle fundraiser for the Cystinosis Foundation UK. Sponsor The Cycle At JustGiving.com
Lena Forsyth was diagnosed with Cystinosis at 7 months old, changing the life of the Forsyth family of Mintlaw, near Peterhead, forever. However, the whole family rose to the challenge of dealing with Cystinosis and… The Forsyth Story On Television
Neil Sugden, trustee for the Cystinosis Foundation UK, joined Simon Moore and swam a distance of 1.5Km as part of Simon’s 22 mile swim during the Achieve More Triathalon Challenge, as covered by Sky and… Cystinosis Swimmer Success
The Fourth Cystinosis Research Network Family Conference was held July 16-18, 2009 at the Marriott Evergreen Conference Resort in Stone Mountain, Georgia. This year’s theme was “Above and Beyond” and there is no doubt that… Fourth Cystinosis Research Network Family Conference
Saturday 8th August saw Jimmy and Elizabeth Forsyth again attending the annual Peterhead Harbour Open Day festival and hosting a stall to raise money for the Cystinosis Foundation UK. The Forsyths, whose granddaughter Lena has… Peterhead Harbour Open Day Success
On August 27th and 28th, Matt Blackham and David Hancock, both originally from Ellon, Aberdeenshire, will be aiming to cycle 200 miles in 2 days to raise awareness of Cystinosis and raise valuable funds for… Over £1,500 Raised So Far
Trevor Strauss’s 23-month-old daughter, Gabby, has Cystinosis and he is the founder of Canadian based charity CARE – Cystinosis Awareness Research. Trevor was recently interviewed for Canadian Rock 107’s Morning Show. You can view the… TV Interview Of Family Dealing With Cystinosis