Help Us To Help Others
Many staff in hospital eye departments want to do more to help people with nystagmus. The reality is that they rarely have the time. In addition, other people who have nystagmus themselves are often best placed to answer the questions that, for example, the parents of a newly diagnosed child have. So thatís where the Nystagmus Network steps in by providing support and information.
We also encourage and fund research, including:
- 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 (Ocular 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.
What we plan to do next:
- In September 2012, we will publish “The Challenge of Nystagmus”, a book on the proceedings of our 2009 international research workshop (cost approximately £10,000 - £12,000).
- In September 2013 we will hold our third international research workshop (estimated cost £40,000).
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.
Dr 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."
Comment from a delegate at the 2009 research workshop: "It was extremely valuable! It is a fantastic opportunity to meet and exchange ideas with people in the field. A unique occasion that is very useful for clinicians and scientists."