Where does my fundraising go?

The Nystagmus Network relies entirely on membership subscriptions, donations, gits in will and fundraising. We want you to understand how the money you raise for us is spent.

No public sector income

The Nystagmus Network does not receive any income from the government or public sector. Instead we rely almost entirely on fundraising and donations from our members and supporters. We use this money to achieve our three stated aims: to support everyone affected by nystagmus, to raise awareness of the condition and to fund research.

We have very low overheads. Our 3 employees work from home, so we have almost no office costs. All the money you donate goes directly towards helping people with nystagmus, raising awareness and funding research.

What does the charity spend your fundraising on?

In recent years the Nystagmus Network has invested in scientific and medical research in universities and hospitals in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton to develop more advanced diagnostic tests and investigate potential therapies. We continue to fund and support new studies.

We fund and organise national and international research workshops, bringing together the foremost experts to encourage collaboration towards the next level and perhaps even a new breakthrough.

Funding research in the future

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.