Cycling the length of the country for CFUK
After donating a kidney to his son Ben last year, Jonathan Cox will be cycling from Land’s End to John O’Groats for Cystinosis Foundation UK in September. Yes, that’s almost 1000 miles. Jonathan is keen to…
2014 International Conference
We are delighted to announce that the 8th International Cystinosis Conference will be held in Manchester, UK in late July 2014. Further details of location and date will be issued soon. We are looking forward…
Sweet Success
Riley was diagnosed with cystinosis, at the age of 16 months, in January this year. His family decided to try and raise money for Cystinosis Foundation UK. They immediately set up a JustGiving page and were overwhelmed with their friends…
Team Tache Dash for Cash at Great Manchester 10K Run!
Congratulations to Damien Froehlich, Emily Froehlich, Cheryl Leigh and Lisa Tattersall, also known as Team Tache Dash for Cash, for completing the Bupa Great Manchester 10K Run on Sunday 26th May. They joined 40,000 other…
Cardgains Olympic Challenge – less than 3 weeks to go!
In March, we told you about the Cardgains Charity Challenge, which this year is a 30km walk through London in aid of Cystinosis Foundation UK. We just wanted to remind everyone who will be anywhere…
Derby Winners
2012 is a year where many hopeful athletes undergo hours of training and physical exertion in order to better themselves to compete in the Olympics. In that spirit, one of the Cystinosis Foundation UK trustees…
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…
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…
Paddock Wood Half Marathon
If you go down to Paddock Wood on the 25th March, you’re sure of a big surprise… Because among the runners at Kent’s largest half-marathon this year will be a team of 30 (yes, thirty!)…