Specsavers Runcorn

Specsavers x UKIST

Fundraising for UK Infantile Spasms Trust (UKIST)
£3,486
raised of £3,000 target
by 104 supporters
Donations cannot currently be made to this page
Participants: Alex, Aparna, Beth, Charl, Chris, Deepal, Fahim, Fran, Izzy,Jess, José, Josh, Laurena, Lucie, Matt, Mike, Nina, Ol, Sophia,Sophie, Stuart, Sue, Zoha
We raise awareness & provide support to families affected by infantile spasms

Story

Our aim at Specsavers is to make a positive difference. Our chosen charity this year is UKIST.

We are aiming to raise £3000 and your donations will be greatly appreciated. We will be raising money through various events both in and out of store.

Events so far:

- snowdon sunrise walk 

- Charles coronation cake sale 

- luxury charity hamper 

- more to be announced!

By supporting UKIST, you will make a real difference. Below is some information of why we have chosen to support this charity.

Hi - My name is Nguyen Nguyen but I am more commonly known as Nina. I am a diabetic eye screener and trainee dispensing optician. My son got diagnosed with Infantile Spasms when he was shy of 6 months old. I was very scared at that moment as the doctors in A&E did not know what it was to start with. IS was very easily mistaken for startle reflex or shudder syndrome (which is benign). 

UKIST was mine and his saving grace at that moment in time, as they provided me with enormous help and support. It was due to them that I could be persistent (to the point of annoying) to pursue the diagnosis for my son, leading to correct treatment in due time, as the longer IS is left untreated, the more detrimental the damage to the brain. 

As it is a very rare epileptic form of seizure, I hope through this fundraising, not only we can spread the awareness of this damaging condition, but also the trust can offer more support to families like mine, and push through more campaigns for treatments in the UK.

The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition. 


About the charity

The UK Infantile Spasms Trust (UKIST) provides a network of support to families with children affected by the rare seizure disorder Infantile Spasms, also known as West syndrome. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition. Infantile Spasms is a rare type of Epilepsy that occurs in young children, usually under one year of age. About 400 children a year are diagnosed in the UK. This is a serious seizure disorder because a child with Infantile Spasms has a chaotic brainwave pattern that may cause loss of skills and brain damage. Infantile Spasms can be very difficult to recognise and is often misdiagnosed as colic and reflux, or startle reflex. Unless it’s recognised and treated early the prognosis for affected children is very poor. By supporting UKIST, you will make a real difference. The charity has three clear aims. First, we’re focussed on improving awareness of the symptoms of Infantile Spasms amongst the medical profession and the public - because early diagnosis is key. Second, we provide a vital network of support to parents and carers with children affected by Infantile Spasms. And third, there more we know, the more we can do, so we’re also supporting the advancement of clinical research into Infantile Spasms.
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Donation summary

Total raised
£3,485.33
+ £425.75 Gift Aid
Online donations
£3,485.33
Offline donations
£0.00

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