Every single pound raised is put to use helping us meet our charitable objectives: support and information, awareness and research.
The Nystagmus Network does not receive any income from the government or public sector. Instead, we rely entirely on membership subscriptions, donations, gifts in wills and fundraising to continue to deliver our support services. We use this money to achieve our three charitable objectives: to support everyone 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 penny 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.
We fund and organise an annual national research workshop, 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 at least one annual small research grant of £15,000.
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 2022 we
- supported almost 750 people with enquiries, helping them to make sense of nystagmus
- engaged with and provided information to over 13,500 people on social media
- invested a further £18,854 in nystagmus research
In 2022 we invested £18,854 in research
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