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Aug 25 2011

Nystagmus Network Open Day 2011

Saturday, October 22, 10 am – 4 pm

Harrow Teachers’ Centre, Tudor Road, Harrow, HA3 5PQ

The Nystagmus Network (NN) is a UK charity run by individuals and families affected by the eye condition nystagmus. We have one employee — our development manager John Sanders – supported by volunteers and committee members. The committee chair is Kathy Williams and our president is Vivien Jones. NN was established in 1984 and is a registered UK charity (number 803440).

Nystagmus is characterised by an involuntary movement of the eyes, which often seriously reduces vision. In the UK many people with nystagmus can register as sight impaired; few can drive a car; most encounter some difficulties in everyday life – both practical and social – and some lose out on education and employment opportunities.

Speakers and events

  • “Congenital Nystagmus is a developmental disorder.” Professor Chris Harris of the University of Plymouth, neuroscientist and adviser to the Nystagmus Network, will explain what that means and what we might one day be able to do about it.
  • “The Genetic Eye Clinic & Nystagmus.” Genetic counsellor Jo Lowndes of Oxford Radcliffe Hospitals explains her role as a genetic counsellor in the eye clinic and the basic genetics of nystagmus and more common genetic conditions such as OCA and CSNB that are associated with nystagmus.
  • Question & Answer session with medical staff and researchers. Got a burning question about nystagmus? Now’s your chance to ask it. (more details below)
  • Talk to Leicester University’s nystagmus research team about treatment options and their wider work on nystagmus.
  • Networking session for teachers, health and other professionals.
  • Meet others with nystagmus and talk to the parents of other children with nystagmus.

Young people

  • Crèche for 15 children – early booking advisable.
  • For young people 8-25 your chance to make a DVD with NN partner charity LOOK (http://www.look-uk.org/). The subject of this year’s drama workshop is audio described cinema – a great idea in principle, but it doesn’t always live up to expectations. So here’s a chance to have fun and do something creative about it. Please email info@nystagmusnet.org for more details or to book a place on this workshop.

Exhibitors

  • Optelec
  • Guide Dogs

Entry fee (includes buffet lunch):

  • NN members: £15
  • Non-members: £25

You can order tickets online here or read more about the organisation, including details of the condition itself, here.

Ask the experts

Whether or not you join us on October 22, this is your chance to ask NN committee members and our expert speakers any question you like about nystagmus. All you have to do is write your question below, email it to john.sanders@nystagmusnet.org and we will try to answer it.

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