Fundraising Update – Almost There
We set ourselves the target of raising £300,000 to help support research for the improvement of cystinosis treatments. By November 2011 we had raised £265,208. Now, in February 2012, we are pleased to announced the…
Share Your Experiences With Others
The Foundation is trialing a “Once A Month Chat Line” to allow those affected by cystinosis to have a discussion with others touched by the condition. The call will be chaired by Jonathan Terry (charity…
Forever Growing – New Trustees
The Cystinosis Foundation UK are pleased to announce the appointment of 3 new trustees to the charity. The last few years have seen a continued growth of the charity. By that we mean an increased…
Jessica Jondle Publishes Book About Life With Cystinosis
Jessica Jondle, 30, a teacher from California, USA, has written a book about her experiences of living with cystinosis. Diagnosed with cystinosis in 1983, when doctors gave her 10 years to live, ‘Roller skating with…
Organ Donation – A Family’s Perspective
Facing the prospect of a major organ transplant is a big enough ordeal in itself. Knowing that the organ was donated from a person who died creates a whole new host of challenges to overcome.…
Prodrugs Research at University of Sunderland
Our thanks go to Professor Roz Anderson, at Sunderland University, for providing us with a recent update on her team’s research into prodrugs that are hoped to deliver improved treatments for cystinosis. This is a…
2012 International Conference Confirmed
The 7th International Cystinosis Conference will be held at the Marriott Charles de Gaulle, Paris, France between June 28 – July 1, 2012. For more information please see the Cystinosis Foundation USA website. Hope to…
Want To Talk About Cystinosis?
The Foundation is trialing a "Once A Month Chat Line" to allow those affected by cystinosis to have a discussion with Jonathan Terry (charity founder and oldest known person in the UK with cystinosis). These…