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What we do

Image of researchers discussingHelp us help others

NN relies largely on fundraising and donations. We use this money for three purposes: 1) To support people who have nystagmus. 2) To increase understanding of nystagmus through our annual awareness raising day and other activities. 3) To encourage and finance research.

We do not receive any income from the Government or public sector.

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

Our 10 year track record on research spending:

  • 2005 – £18,000 for the first ever international nystagmus research workshop leading to new projects in Abingdon, UK.
  • 2007 – £5,000 for genetics research by Southampton University to build on the discovery of the first gene (FRMD7) associated with nystagmus.
  • 2009 – £25,000 funding for the second international nystagmus research workshop in Abingdon, UK.
  • 2010 – £10,000 to Cardiff University for innovative eye tracking equipment to diagnose infants and investigate how and why our eyes move.
  • 2011 – NN contributed £8,000 towards the purchase of an OCT (Optical Coherence Tomography) scanner by the Leicester nystagmus research group.
  • 2012 – NN raised half of a £15,000 grant to fund research by Moorfields Eye Hospital in London into whether or not contact lenses help people with nystagmus. We also published “The Challenge of Nystagmus”, a book on the proceedings of our 2009 international research workshop.

    2013 – NN put £27,000 into research, including projects in Plymouth (“time to see” research, Southampton (gene testing kits), Cardiff (2 projects: one on oscillopsia and the other on eye-tracker software development), Leicester (equipment for balance research) plus £10,000 into our 3rd International Research Workshop.

    2014 – We invested £30,000 in three projects:  £15k to Cardiff to develop a way of assessing the impact of nystagmus on adult vision; £10k to Southampton to devise an equivalent assessment tool for children with nystagmus: half of a £10k grant to Leicester to support their balance research (the other half was contributed by Fight for Sight.

    2015 – In January we gave £43,000 to Southampton for the development of a genetic diagnostic test. This money was raised in conjunction with the Giles Warman Foundation.

Image of laboratory workersWhat we plan to do next:

    • Continue our annual research funding round started in 2013. The amounts available will vary depending on income.
    • Hold our fourth international research workshop in 2017.

What we would like to do (when we have the funding)

  • Produce a professional DVD about nystagmus (estimated cost £5,000 to £10,000). We would use this to educate more people – such as teachers and hospital staff -- about the effects of nystagmus.
  • 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 hard to estimate, but would probably be upwards of £200,000.

Image of visual aid equipment being displayedDr Jonathan Erichsen: "As the Director of the Research Unit for Nystagmus (RUN) here at Cardiff University, I wanted to express our sincere gratitude to everyone at the Nystagmus Network, including its members, whose generous donation has made it possible for us to purchase a state-of-the-art eye movement recording system, the Tobii X120. In addition to the fact that we are now in a position to measure non-invasively how people view simple and complex scenes, the acquisition of the Tobii system allows us, for the first time, to investigate the eye movements of even very young children with nystagmus. This should enable us, in the future, to document the actual development of nystagmus at an early age and its effect on children's vision in a variety of environments." 

Comments from delegates at the 2013 research workshop include: "I thought it was a beautifully organised event, and it was clear everyone attending found it stimulating and rewarding. Let us hope that further research and many collaborations arise from it: I certainly have had several new ideas as a result.”

“Many thanks for hosting such a wonderful event. I think everybody took a lot away from the conference. It was 3 brilliant days where I believe everybody, especially myself, learnt a lot about the field of nystagmus. It is obvious that nystagmus research is going places and that not only do we have such amazing experts with years of experience behind them but also that we have a young and enthusiastic group to take it to the next level.”


To make a donation to the Nystagmus Network please click on the link below:

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