About Cerebra

Family relaxing togther

Supporting families in their everyday lives

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.

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.

Our support services:

We offer:

  • information and advice on a number of topics, over the phone or through our website
  • face to face support through our network of Regional Officers who can help with form filling and letters, completion of the Disability Living Allowance form, meetings, specific local information and activities
  • a sleep service to give advice and support to families on a wide range of sleep issues
  • a free postal lending library for books and sensory equipment
  • an innovation centre who design bespoke equipment to meet family’s needs
  • a monthly e-newsletter full of informative articles and stories
  • workshops and other events across the UK.

Our research:

We 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 neonatal 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

The Information Standard

information-standard-member-logo-positive_graphic-onlyCerebra’s aim is to provide high quality health and social care information for the parents and carers of children aged 0-16 years with neurological conditions. Cerebra has been a certified member of the Information Standard since August 2013. The Information Standard is an independent scheme, supported by NHS England, to ensure only the highest quality health and social care information is produced. This means that our relevant products have been through the schemes rigorous quality control procedure. For more details on what it means to have achieved the Information Standard certification, visit:

http://www.england.nhs.uk/tis/

Cerebra’s objectives are to:

  • Use only current, relevant, balanced and trustworthy sources of information and ensure they are clearly referenced
  • Inform parents and carers about different conditions and the issues surrounding these so that they have a better understanding
  • Empower parents and carers to make their own decisions and resolve problems and issues

Cerebra is responsible for the accuracy of the information produced. The Information Standard shall not be responsible for any inaccuracies or omissions in the information published on Cerebra’s website. Weblogs, forums and personal experience pages/videos are excluded from the scope of certification.

Who we help:

We 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.

Meet our Senior Management Team

For more information on what we do please get in touch with us on 01267 244200 or enquiries@cerebra.org.uk