Quizzy Rascals
Well done to CFUK Trustee Neil Hutchison and his wife Alex, who raised £1,088 (and 15 pence!) through a quiz night and raffle hosted in their local bowling club in West Linton. The quiz, universally…
Sisters raise awareness in national newspapers
Sisters Emily,3, and Poppy-Mae,23 months, have recently raised awareness for cystinosis by appearing in both the Sun and Daily Mail newspapers. Mum, Jessica Kemp, 25, was eight months pregnant with Poppy-Mae when Emily was finally…
An Eggs-ellent Easter Fundraiser
Kelly Chilvers, mother of 17 month old Daniel Howell who has Cystinosis, is proud to report a very successful fundraiser for Cystinosis Foundation UK. Her aunt, Elaine Thomas, held a Coffee Morning and an Easter…
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…
Card Gains June Challenge
On June 26th around 80 people will be taking part in the 2012 Card Gains Olympic Challenge! The challenges involves walking a 30 kilometre circular route, starting at Putney Wharf by the Thames in London,…
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.…