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Curtis's fundraiser for UK Infantile Spasms Trust (UKIST)

Curtis Newbould-Smith is raising money for UK Infantile Spasms Trust (UKIST)
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AJ Bell Great Birmingham Run Half Marathon 2026 · 3 May 2026 ·

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.

Story

As Hugo’s parent I just wanted to share something that means a lot to us.

The UK Infantile Spasms Trust has been amazing for me my wife and Hugo. When you’re dealing with Infantile Spasms it’s scary and isolating and finding people who actually get it makes such a difference. It’s a serious condition and if it isn’t picked up early the outcome can be really poor which makes the support even more important.

This is a small charity but they help families like ours in a big way. Their online community was a lifeline and they work with medical professionals to spread awareness of a condition most people have never even heard of. They support parents and the whole family when things feel overwhelming.

I’m not setting a target because every pound counts for a charity this size. I honestly can’t explain how great they’ve been for us.

If you can spare anything it really will make a difference. Thank you 💜💜💜

Donation summary

Total
£1,200.00
+ £293.75 Gift Aid
Online
£1,200.00
Offline
£0.00

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