UK Infantile Spasms Trust
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.