AGM 2019 Minutes

Our third UKIST AGM was held on Saturday 4th May 2019. UKIST was set up by a group of UK based parents whose children had suffered or were suffering with Infantile Spasms. All Trustees are volunteers who dedicate their time to the charity around their working and home lives with the united goal of wanting […]

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UKIST autumn grants awarded

UKIST are delighted to announce that we have been able to award a series of grants totalling £3551 to help seven families with equipment or therapies for their children affected by infantile spasms. This is the second round of grants awarded in 2018, and one of our previous recipients had this to say about how […]

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Hard won victory

Penny’s mum Dayna tells us about their battle “Our IS journey hasn’t been easy, to say the least. Penny was diagnosed at 9 weeks old and we quickly found out that all the typical meds used to treat infantile spasms weren’t going to work for her. The cause of her seizures was a cortical dysplasia […]

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