WIGGLES AND SQUIGGLES
The nystagmus research workshop, Abingdon, Sept 1-3, 2005
By John Sanders
This article first appeared in September 2005 in the “Focus” newsletter of the UK Nystagmus Network.
Thirty experts from four countries giving 18 talks over three days. It took two years to organise, but the first ever nystagmus research workshop was worth it. Bringing so many doctors, scientists and other experts together in one room to talk about nystagmus really produced results. It sparked fresh thinking, inspired plans for new research and sowed the seeds for future international collaboration.
Several of us from NN sat in on the workshop and were impressed by the enthusiasm and commitment of the delegates to our ultimate goal of finding a cure for nystagmus. A single anecdote sums it up for me. The eight year old daughter of one vision scientist pulling a scrap of paper covered with eye movement recordings from her pocket, showing it to one of his colleagues and saying: “This may just look like a lot of wiggles to you, but to my Dad, it’s his whole life.”
In terms of immediate outcomes, US ophthalmologist Rich Hertle is editing a magazine supplement based on the workshop. Here in the UK vision scientists Chris Harris and Richard Abadi -- who helped us organise the event -- are working with others on a book about nystagmus which will draw on the workshop presentations.
COMPLEXITY
Those presentations confirmed what we’ve suspected for a long time, namely that nystagmus and its causes are complex, very complex. There are no quick fixes, but advances are gradually being made in understanding the basic mechanics of nystagmus.
In terms of benefits for future generations or even people who have nystagmus now, we heard about potentially promising developments in genetics and drug treatment. Improving patient information and the quality of research results are also on the agenda.
During the three days, discussions covered everything from maths and biochemistry to neuroscience and retinal development, with talks on topics such as neural integrators, waveforms and burst cell firing. Not surprisingly, NN representatives were frequently heard to mutter: “Well, that went way over my head.”
But we grasped enough to see that the workshop was pushing at the very frontiers of science. Simply trying to agree what nystagmus is led to heated debate on day one (Thursday). On the question of whether nystagmus is present at birth, our experts agreed to disagree.
MODELLING
Friday morning was devoted to modelling and waveforms. This involves trying to work out from the way our eyes move what has “gone wrong” in the neural pathways (the “wiring”) in our brain which control our eye movements.
Modelling relies heavily on high level maths – the kind which involves lots of strange squiggles and very few numbers. As the professor chairing the modelling session himself confessed: “I thought I understood what people had said until I came to summarise it.”
Modellers also try to work out why things have gone wrong, but this gets very theoretical since no-one can yet agree exactly what has gone wrong. Nonetheless, modellers have made progress during the 21 years NN has been around.
Friday afternoon and Saturday morning were devoted largely to the management and treatment of nystagmus. I was still well out of my depth in terms of what was being said, but occasionally believed – probably mistakenly – that I understood the odd word.
Just as important as the presentations and formal discussions was the socialising in the evenings. This provided opportunities for UK researchers to sit and chat about ideas with US scientists or for young PhD students to meet internationally renowned professors who have been looking at nystagmus for decades.
VERY VALUABLE
Judging the success of such an ambitious event so soon after it has finished may be tempting fate. But we were very encouraged by what we saw and heard. Perhaps most promising of all, the delegates themselves said the workshop was extremely valuable and agreed that another one should be held in three or four years.
We’ll keep you posted on that and other developments resulting from the workshop. The December issue of Focus, for example, will contain an article about bioptics and driving by Chris Dickinson, a workshop delegate from the University of Manchester.
Finally, we would like to thank the Esmée Fairbairn Foundation for its generous donation and you, our members. You made this workshop possible through your support for NN. Without your financial contributions, we could never have funded such an event.
On top of that, several researchers commented on the willingness of our members to volunteer as research subjects. That makes an enormous difference to the nystagmus research carried out in the UK. Following the workshop, research activity is likely to increase, so your support will be just as important in future.
© John Sanders, September 2005
Email: John Sanders
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