How is my fundraising spent?


The Nystagmus Network relies entirely on membership subscriptions, donations, gifts in wills and fundraising. Every single pound raised is put to use helping us meet our charitable objectives: support and information, awareness and research.

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. We are run by a committee of dedicated volunteers. Our tiny staff team 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 testing, including genetics and investigate potential therapies to improve the quality of life for people living with congenital and acquired nystagmus. We continue to fund and support nystagmus research, working closely with researchers and clinicians.

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

Thanks to the generosity of our fundraisers, we have been able to commit to joint investment in partnership with the UK’s biggest sight charity, Fight for Sight, in a brand new PhD studentship in nystagmus research as well as continuing to offer an annual small research grant award of £15,000.

Our total investment in nystagmus research in 2019 was £27,775

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 2019 we delivered:

  • support to 500 members
  • education advocacy service to 22 families 
  • free information documents to 3,001 people
  • enquiries answered by phone: 140
  • enquiries answered by email: 148
  • enquiries answered on social media: 181
  • Open Day places for 200 people
  • attendees at our annual research workshop: 23