UK Infantile Spasms Trust
Registered Charity Number: 1172167
About the Charity
The UK Infantile Spasms Trust (UKIST) provides a network of support to families with children affected by the rare seizure disorder infantile spasms, also known as West syndrome.
What our donation will help fund
Infantile Spasms is a rare type of epilepsy that occurs in young children, usually under one year of age. This is a serious seizure disorder because a child with Infantile Spasms has a chaotic brainwave pattern that may cause loss of skills and brain damage. About 400 children a year are diagnosed in the UK, and the UK Infantile Spasms Trust (UKIST) is dedicated to supporting this community of children and their families.
The Movement for Good funding will enable 60 children affected by Infantile Spasms to attend Camp Mohawk with their families in June 2023.
Camp Mohawk is a multi-functional day centre for children with special needs. The centre provides a range of activities, facilities, and natural space to encourage children with a variety of special needs to play and socialise in a positive and uplifting environment that accepts and welcomes them all. UKIST provides families affected by rare diseases with opportunities to connect face to face with families in a similar position is hugely important for their wellbeing. The journey from diagnosis is tough for every member of the family. The opportunity to connect, be listened to and form relationships has long lasting benefits.
