UKIST is grateful to Kamala Murugesu, one of our fabulous group admin team, for representing us at the epilepsy research conference On Tuesday 17 May I attended the Shape Network’s first in-person conference on Epilepsy Research at the Francis Crick Institute, London on behalf of UKIST. It was a great half day conference filled with […]
News
Pioneering Study Discovers an Underlying Cause for Infantile Spasms and Points to a Novel Therapy
UKIST were really excited to hear news this week from an American study, funded by the charity CURE epilepsy, of a potential new treatment for infantile spasms, currently at the stage of success in animal models. The currently available treatments work for about 75% of patients initially (though some later relapse) but have significant side […]
Our May warrior – Violet
When we found out we were pregnant with our second child we were delighted! We had always wanted a sibling for our 3-year-old son Ronnie. The pregnancy progressed as normal, with no causes for concern, until we attended a routine scan at 36 weeks. The sonographer noticed something unexpected on our daughter’s brain. The ultrasound […]
Fantastic news – NICE publish new guidelines for epilepsy
Today NICE have published their new guidelines for assessment and treatment of epilepsy. The old guideline did not make any specific provision for infantile spasms, lumping all first seizures together and recommending an assessment within 2 weeks. UKIST are honoured to have been a stakeholder in developing and reviewing the new guidelines, which recognize ( […]
UKIST annual meeting report
SATURDAY 26 & SUNDAY 27 MARCH 2022, VIA ZOOM Attendees: Alice Goldhill, Amy Dowding, Jenny Rawling, Louisa Freer, Michelle Scoffield, and Samia Sanders. Apologies: Belen Robbins. UKIST AMBITIONS Trustees unanimously agreed to maintain the current charity ambitions, with no amendments: Educate – to improve awareness of the symptoms of infantile spasms amongst the medical […]
All the P’s – Participating in parent priority projects and priority setting partnerships – parents informing research
Our Trustee Jenny Rawling writes Wearing my trustee and parent ‘hats’ I’ve had the privilege of taking part in two workshops this week that aim to hear the voices of all those affected by epilepsy in order to inform research priorities. The first was hosted by the James Lind Alliance and British Paediatric Neurology Association […]
Our April warrior – Oliver – infantile spasms as a result of HIE
Our warrior this month is Oliver who was diagnosed with a birth injury called HIE – hypoxaemic ischaemic encephalopathy (lack of oxygen – restricted blood flow – affecting the brain). HIE is one of the major underlying causes of Infantile spasms. Half of children who have HIE which involves neonatal seizures, damage to certain areas […]
Our March warrior Chloe – beating the odds.
Chloe was born unexpectedly at 28 weeks 5 days weighing a little over 3lb and spent the first 170 days of her life in hospital. She battled sepsis and meningitis in her first week and then the doctors discovered a bronchogenic cyst compressing her airway. At just under 3 weeks old she had her first […]
Join us for Infantile Spasms Awareness Week 1st-7th December 2021
Please join us to raise awareness during the week 1st-7th December 2021 – we will be sharing regular updates on our social media. Together we can STOP infantile spasms. […]
Our December warrior Willow – beating the odds
Willow was born on Wednesday 27th January 2021 via forceps delivery after a lengthy induction. There were no complications once she was born, just pure love and joy of our beautiful baby girl entering the world. We went home the next day and started our new lives together. Around 5-6 weeks old we noticed Willow […]
