Events

Cystinosis Foundation UK supporter, Wendy Exelby, who has a son with cystinosis, will be doing a 16.6. mile sponsored walk from her home in Old Goole through to Adlingfleet where she grew up. The walk will take place on 15th October and will be made challenging by the fact that she suffers from arthritis and […]

Back in June this year a group of energetic fundraisers took part in the Gung-Ho! Seriously Fun 5K Inflatable Obstacle Course in Edinburgh. David Kells, Adam Neilson, Steve Gault & Rebecca Gault all took part in the event, raising £495 for Cystinosis Foundation UK. They chose to raise money for us because David’s son Riley […]

Cystinosis Foundation UK supporter Amy Mace recently organised an ambitious charity quiz night. In addition to a quiz the event also included a raffle with generous prizes donated by local businesses. It took place on 21st May 2016 and was a huge success, 130 people took part, raising a fantastic total of £2046. Amy’s son, […]

We would once again like to thank Redcar and Cleveland’s Mayor Councillor Brenda Forster for choosing Cystinosis Foundation UK as one of her chosen charities, along with the Great North Air Ambulance Service (GNAAS). Mayor Forster recently hosted a charity ball, this consisted of a great night of entertainment plus a three course meal. There […]

Iain McGilvray has raised over £17,000 for Cystinosis Foundation UK by completing a gruelling “Tough Mudder” event in June this year. He had to endure mud climbs, ice baths and even electric shocks! Iain decided to do the event after his cousin, Joel was recently diagnosed with cystinosis. He set a target of £5,000 but […]

28th February 2015 is the eighth international Rare Disease Day, which takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. You can help raise awareness of cystinosis and […]

Luka Babiy, whose sister has cystinosis, is running the London Marathon this year despite never having previously ran a marathon. We are extremely grateful to Luka for choosing to raise money for us in this way. Good luck Luka, we hope the training is going well! My name is Luka and I am a primary […]

Last month Richard Ayre and friends completed the 10K Stockton River Rat Race in honour of Daniel Howell, who has cystinosis. In doing so they raised over £500, here’s a few words from Richard: “I originally starting fund raising for the Cystinosis Foundation in 2012, when a good friends son was diagnosed with Cystinosis, once […]

Cystinosis Foundation UK would like to thank everyone that helped make Layla’s charity fun day a great success. The event took place in Surrey on 10th August and raised over £1,000. The organisers worked extremely hard to create a fantastic event with lots of fun activities, including a bouncy castle, face painting, cake stalls, dancing […]

A group of adventurous fundraisers have recently completed a “Tough Mudder” challenge to raise money in honour of Madison, who has cystinosis. The event saw them taking on various obstacles and getting very muddy in the process! The “Mad Mudders” as they call themselves raised over £2,000 for Cystinosis Foundation UK. Thank you! We are […]

We’re Looking for New Trustees – Can You Help? Cystinosis Foundation UK is a charity that helps and supports people living with the rare [...] Read more...
National Cystinosis Study Day at QE Hospital, Birmingham The QE Hospital in Birmingham are hosting a ‘National Cystinosis Study Day’ on Saturday, 26th [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
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