At 10 weeks old our son Charlie was diagnosed with infantile spasms and West Syndrome, but after numerous tests and scans no cause could be found. He began treatment with prednisolone and vigabatrin which really helped and he was initially spasm free with a clear EEG. Apart from the side effects of the steroid with his puffy face and gaining weight faster […]
News
Thank you to Brook Foods
Brook Food Processing Equipment 25th Anniversary charity donations hit £10,000 with June’s donation going to UKIST. As Brook Food reach the half way point of their silver anniversary celebrations, the chosen charity for June was the UK Infantile Spasms Trust. Brook Food Processing who pride themselves on being a family run business, for the second […]
July warrior – Jaxon.
Jaxon’s story – as told by his mum Emma, highlights the difficulty in getting swift action when infantile spasms are suspected, even in children known to be at increased risk of developing them because of an underlying condition. UKIST supports worried parents like Emma to advocate for rapid diagnosis and treatment for their children. One […]
UKIST at RCPCH Epilepsy conference
UKIST sent two representatives to the Royal College of Paediatrics and Child Health Epilepsy conference in London. We attended last year as delegates, this year we were presenting a poster in their exhibition and handing out our patient booklets to neurologists, paediatricians and epilepsy nurses. We got fantastic feedback and made lots of new contacts. […]
Thank you to Dayna, Faye and Penny!
Dayna, Faye and Penny organised a nursery fun day that raised over £160 for UKIST! We are so grateful to our supporters, big and small, for their efforts to raise funds and awareness. […]
UKIST warrior of the month – June
Our ‘warrior’ this month is the lovely Tristan, his story is told by his dad Adrian, who is now one of our network of regional parent ambassadors. It illustrates why our focus at UKIST is on raising awareness within the medical profession to speed up diagnosis – as delayed diagnosis affects long term outcomes. […]
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 […]
Our annual trustee meeting was on 4th May
Our annual trustee meeting was held on May 4th and we will update you with the annual report, shortly. […]
UKIST joins forces with international charities for awareness week
UKIST has joined over 25 other international charities to spread the word about infantile spasms during Infantile Spasms Awareness Week 2018. Infantile spasms are a medical emergency which can cause catastrophic damage to a child’s brain if they aren’t treated, but many parents are unaware of the signs to look out for, so the charities […]
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 […]
