Will Newman

Ellie in my head

Fundraising for Cystinosis Foundation UK
raised of £30,000 target
Cystinosis Foundation UK

Verified by JustGiving

RCN 1074885
We help and support cystinosis sufferers to increase understanding of cystinosis


When our granddaughter, Ellie, was diagnosed with cystinosis just after her first birthday in July 2016 we were in shock.  Frantic internet searching led us to all the grim news about a condition that was incurable, degenerative and that Ellie might not live beyond 10.  Thankfully we came across Cystinosis Foundation UK where we found more encouraging news about treatment and about people getting on with their lives, despite the condition. We also found that research is ongoing for better treatments and ultimately a cure.

What could we do as grandparents to help? We could obviously help with the punishing regime of medication that takes its toll not only on Ellie, but also her mum  and twin sister.  

In October 2016 I decided to try and raise some money towards research by having Ellie's name shaved into my head as an outward reminder of how much she is always in our thoughts.  I started out with the aim of raising £500, about £3 for every person with cystinosis in the UK.  Thanks to some amazing support this total was smashed almost immediately and the targets continue to be smashed year on year. Many donations from generous friends and family and some from complete unknowns.

Margaret had the idea of upcycling greetings cards and selling them to raise funds.  Starting small by selling to friends this has now grown into an enterprise with outlets in a number of local business as well as people dropping off used cards at the door.  Now she is able to bank £1000s each year for Cystinosis Foundation UK.

The amounts raised seem huge compared to where we started but research and drug development is really expensive and, being such a small charity, what we raise feels like a drop in the ocean.

"We know only too well that what we are doing is nothing more than a drop in the ocean. But if the drop were not there, the ocean would be missing something." Mother Theresa

If you could give just £3 that would help us continue to support the work the charity is doing - 

and to keep Ellie smiling.

Thank you

About the charity

Cystinosis Foundation UK

Verified by JustGiving

RCN 1074885
Provide support to anyone diagnosed with cystinosis, as well their families and friends Highlight the disorder to the medical profession and the wider community Support research into the treatment of cystinosis Work with other organisations to understand more about metabolic disorders

Donation summary

Total raised
+ £2,630.27 Gift Aid
Online donations
Offline donations

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