Every single pound raised is invested in helping us meet our charitable objectives: support and information, awareness and research.

Our income

The Nystagmus Network does not receive any income from the government or public sector. Instead, we rely entirely on voluntary contributions such as membership subscriptions, donations, gifts in wills and fundraising to continue to deliver our services.  We use this money to achieve our three charitable objectives: to provide support and information to people living with nystagmus, to raise awareness of the condition and to fund research.

We have very low overheads. We are run by a committee of dedicated volunteers. Our tiny staff team work from home, so we have almost no office costs. Every pound goes directly towards helping people with nystagmus, raising awareness and funding research.

How we spend it

Since the 1990s the Nystagmus Network has invested in scientific and medical research into nystagmus at universities and hospitals in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton to develop more advanced diagnostic testing, including genetics, and investigate potential therapies to improve the quality of life for people living with congenital and acquired nystagmus. 

In the last decade we have invested on average £18,000 per year directly into nystagmus research projects.

We fund and organise an annual international nystagmus symposium and an annual UK research workshop, bringing together the foremost clinical, academic, scientific and research experts to encourage collaboration towards the next level of knowledge and perhaps even a new breakthrough.

Funding research in the future

Thanks to the generosity of our fundraisers, since 2018 we have been able to commit to joint investment in partnership with the UK’s biggest sight charity, Fight for Sight, in PhD studentships in nystagmus research as well as at least one or two annual small research project grants.

We would like to help fund a major multi-centre research project into finding out whether it is possible to prevent nystagmus developing in new-born infants. Several of our research partners believe prevention may be possible. The total cost of the project is estimated at over £200,000.

We would also like to support research into the social and emotional aspects of nystagmus and, in particular, help combat some of the isolation adults with nystagmus tell us they experience.

Thanks to our fundraisers and donors, in 2021 we 

•  supported almost 600 people with enquiries, helping them to make sense of nystagmus

• engaged with and provided information to over 13,000 people on social media

• invested a further £17,320 in nystagmus research

In 2021 we invested £17,320 in research