How we help

The UK Infantile Spasms Trust (UKIST) was established in 2017, and provides vital support to families with children affected by the rare seizure disorder infantile spasms (IS), 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.

Children diagnosed with IS will typically endure a barrage of tests and treatment before they are even one year old. That’s why at UKIST, we call them warriors – and we believe that every warrior deserves an army behind them.

If you're worried about infantile spasms, or suspect your child may be experiencing IS seizures, try to capture them on film and go to your nearest children’s A&E department. For less urgent advice and support, you can also find help through our Facebook support group – you’ll just need to complete a few details about yourself and submit a request to join.

Our charity’s aims:


We’re working to improve awareness of the symptoms of infantile spasms amongst the medical profession and the public - because early diagnosis is key.


We provide a vital network of support to parents and carers with children affected by infantile spasms - with several online communities and a grant scheme.


The more we know, the more we can do, so we’re also supporting the advancement of clinical research into infantile spasms - our news has more on research that UKIST has funded.

Meet the team

The UKIST team are a group of parents who found each other online. Out of frustration at a lack of UK-specific information and support, and a desire to help others in the same boat, a registered charity was born. Find out more about our trustees and support team below:

Our Trustees

Core team members

Friends and Founders

UKIST is part of something bigger!

In September 2018, UKIST became an official partner in the Infantile Spasms Action Network (ISAN).

The Infantile Spasms Action Network (ISAN) is a collaborative network of over 25 international charities and organisations dedicated to raising awareness for infantile spasms.

The network was convened by US charity the Child Neurology Foundation (CNF) in response to a need to improve awareness of the symptoms and impact of infantile spasms. Its activities centre around Infantile Spasms Awareness Week, which takes place every year from 1-7 December.

The network's origins date back to 2015, when the CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year awareness and education initiative. In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness, and today, the Infantile Spasms Action Network was born.

Get in touch

If you’re worried about Infantile Spasms or are looking for support and a friendly ear, get in touch via our contact page – we’re here to help