Cerebra

Living with neurological conditions can make life very hard, not just for the child, but for their family too. At Cerebra, with the help of our supporters, we aim to make it easier.

Founded in 2001, Cerebra is a unique national charity that strives to improve the lives of children with neurological conditions, through research, information and direct, on-going support.

Their support offer includes:

  • Parent support workers who can offer face-to-face help with filling in forms and attending meetings.
  • A holiday home in Pembrokeshire, South West Wales that families can use for short breaks.
  • The provision of adapted equipment.
  • Numerous publications and factsheets, many of which are downloadable free of charge.

Who they help:

Children 16 or under with a wide range of neurodevelopmental disorders and conditions.  The general areas we cover are listed below with a few examples of conditions that fall within the broader categories:

  • Cerebral Palsy
  • Autistic Spectrum Disorders
  • Developmental disorders like global developmental delay, dyspraxia and learning disabilities.
  • Seizure disorders such as Epilepsy, west syndrome, lennox gastaut syndrome and dravet syndrome.
  • ADHD
  • Traumatic Brain Injury like head injury and shaken baby syndrome.
  • Acquired Brain Injury due to infections like encephalitis and meningitis, stroke, brain tumours, hypoxic event or haemorrhage.
  • Down syndrome and other Chromosomal/Genetic conditions  – Some examples being Trisomy 13 (Patau syndrome) and 18 (Edward syndrome), Fragile X, Angelman syndrome, Prader-willi syndrome, Cornelia de Lange, Rett syndrome, Williams syndrome and chromosome deletion disorders.
  • Brain Malformation/Abnormality like Agenesis of the corpus callosum, Dandy Walker syndrome, Arnold Chiari malformation, lissencephaly, microcephaly and macrocephaly.
  • Degeneration of the brain – Cerebral atrophy and Periventricular Leukomalacia for example.
  • Hydrocephalus
  • Conditions caused in utero such as Foetal alcohol syndrome or as the result of some sort of toxin.

Research:

They sponsor research at six world leading university research departments which:

  • aims to understand the causes of cognitive, behavioural and emotional problems experienced by children with rare genetic disorders
  • helps families access their legal rights and entitlements to health ad social care
  • would allow doctors to define measures for early interventions that would improve the life chances of babies
  • aims to predict mums at risk of early delivery and prevent it from happening so that fewer babies need noenatal intensive care and do not suffer the complications of being born too early
  • Focuses on the wellbeing of the child and their parents, siblings and, potentially, grandparents
  • involves families affected by childhood disability in research to ensure research topics are relevant and important to families

Cerebra is funded through a comprehensive range of fundraising programmes, including; Run for Cerebra, Corporate fundrasing, their challenge card, the Count Me In Lottery and many more.