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104 %
£2,609.12
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Louise Kells

Riley's page

Raising money for Cystinosis Foundation UK because they need funding for research.

104 %
£2,609.12
raised of £2,500 target
by 72 supporters
Donate

Cystinosis Foundation UK

TO PROVIDE SUPPORT TO ANYONE DIAGNOSED WITH CYSTINOSIS, AS WELL AS THEIR FAMILIES AND FRIENDS. TO HIGHLIGHT THE DISORDER TO MEMBERS, THE MEDICAL PROFESSION AND THE WIDER COMMUNITY. TO ASSIST IN THE PROMOTION OF RESEARCH INTO THE TREATMENT OF CYSTINOSIS. TO WORK ALONGSIDE OTHER SIMILAR ORGANISATIONS IN UNDERSTANDING MORE ABOUT METABOLIC DISORDERS IN GENERAL

Charity Registration No. 1074885

Story

Cystinosis is a rare genetic disease that affects approximately 150 people in the UK and about 2000 people worldwide. It causes the amino acid ‘cystine’ to accumulate in the body’s cells. Over time this destroys various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Very few people have heard of Cystinosis, including many medical professionals.

Riley is 7 years old and was diagnosed with Cystinosis at 16 months. It took a very long time and many different tests before doctors eventually diagnosed him with the condition. He has to take a variety of medicines, eyedrops, supplements and injections throughout the day and night.

Because Cystinosis is so rare and affects such a small population, research money is scarce to nonexistent which is why it is so important that we can raise as much as possible.

Currently there is no cure. In the past it was rare for people with Cystinosis to survive into adulthood but thanks to charities such as Cystinosis Foundation UK there is real hope. The organisation funds research into the condition, provides support and advice for patients and families, and raises awareness of Cystinosis among the medical community.

All of the money raised on this page will go to the Cystinosis Foundation UK. Where possible, please Gift Aid your donation.

Thank you :)

Photos

10
  • Riley and his Team after they completed Gung-Ho 2016
  • The Team ready to take on the Gung-Ho course!
  • +8

Supporters

72

Fundraising team