About Us

The Cerebral Visual Impairment Society was first registered as a charity in England and Wales, in February 2014. Our initial aim was to raise awareness of the condition whilst offering advice and support to those affected by CVI, their families and caregivers. This continues to be our ongoing aim.

We support families directly and deliver awareness raising and training sessions, including several at the request of other vision charities and organisations.

Our aim is to ensure that all affected by CVI at any stage of life, whether it is from birth or acquired later, are able to access the support needed for them to thrive and be happy. This means their having good self esteem, being understood and valued along with opportunities to experience positive social relationships. Effective access to taylored education and appropriate measures in the workplace are essential.

Cerebral visual impairment has become the commonest cause of visual impairment in children in the industrialised world. Moreover we are also frequently being contacted by older individuals affected by CVI, who are seeking advice and support. We envisage that this group will also significantly increase in numbers, owing to increasing recognition of adult CVI.

We provide support and advocacy for affected people and their families and training and awareness raising sessions to  a wide variety of groups ranging from parents to professionals.

We must also recognise that children diagnosed with CVI now, will grow up. Their future access to appropriate support will enable them to thrive and become the best that they can, no matter how severely they are affected. Globally, society needs to become much more aware of this condition, its alternative labels, and its impact.

We hold an Annual Convention which has proved very popular, which provides opportunities for parents, people with CVI and professionals to meet up and learn from each other in a mutually supportive environment.

Suzanne Little, one of our trustees is working directly with medical and other professionals on a project focussed on young people who are severely affected by CVI. This project is enabling many to engage visually, often for the first time. Linked to this we funded a project  carried out by students at Queens Mary’s University.

We will to continue to work with medical professionals and other organisations and groups serving the needs of all those with CVI, to raise awareness of CVI, its features and its impact.

CVI is a large ‘umbrella’ term for a variety of brain based visual impairments. Our aim is to enable people with the condition to be identified as quickly as possible and to learn more about how to manage the complex range of conditions that make up the cerebral visual impairments.

Our ultimate goals are that by continuing and developing what we do, the ‘umbrella’ will offer shelter and support to all who have one or more cerebral visual impairments, be they child or adult and that affected people will be identified as soon as possible via consistent assessment and diagnosis pathways.

All our work is entirely carried out by volunteers at ‘grass roots’ level.

CVI Society

The CVI Society is entirely run by people giving up their spare time to share information and support others.

If you can provide funds for the things we cannot get for free then you can help us to help others.