Susans' page

Fundraising for Cystinosis Foundation UK

122 %

£735.00

raised of £600 target

by 43 supporters

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Event: Hair Raising Funds

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

I've just had my hair cut by a 10yr old to raise funds for the Cystinosis Foundation Uk! I've started uploading photos for you to see ( apparently I can only have 10 on here) and if you're lucky I'm hoping to find time to edit a video clip for you. Bear with me folks!

My 'stylist' for the day has Cystinosis and has to take a massive amount of medication. She was diagnosed at 10 months old and each month takes delivery of bottles of medicine, tablets,capsules, drops and eye drops weighing over 12kg in total. She has to have eye drops every two hours during the day to disolve the crystals that are forming in her eyes and she has Cystagon every 6 hours around the clock. As well as this she takes oral medicines including sodium bicarbonates, potassium chloride and various other tablets. That's her in the picture and no, she didn't use the shears! I just thought that might make a few of you smile ;-)

Currently there is no cure and with around just 150 patients in the UK most of the fundraising done to help find one is done by family and friends of patients as the charity can't afford specialist marketing and it is therefore increasingly difficult to raise the amounts needed. Anything anyone can do to help would be so much appreciated.

For more details visit http://www.cystinosis.org.uk

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now, this will of course guarantee you my everlasting love 'n' hugs. Sue xxxxxx

Thank you SO much to everyone who has sponsored me, you've been very generous and I love you all. My hair actually looks rather fab, she's done a great job. SOME photos will appear later.

Suze

xxxxx

Photos

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