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Contact

Nystagmus Network

John Sanders
Tel: 0845 634 2630 (UK only)
Tel: 029 2045 4242
email: john.sanders@nystagmusnet.org

Please phone or email us if you need our postal address.


Registered Charity Number: 803440

Who Is Who

Click on the pictures below to find out more about the NN team. All committee members either have nystagmus themselves and/or are the parent of a child with nystagmus. The committee are all volunteers who help to run NN in their spare time. To find out more about NN or volunteering with us, email john.sanders@nystagmusnet.org.

  • Richard Wilson
  • Richard Wilson - Chairman
  • Richard Wilson has congenital nystagmus and has been a member of NN since the mid-1990s. He has a daughter with nystagmus and a son without. He has been a Civil Servant for nearly 30 years working in employment, education and transport. He currently works as a senior manager with the Maritime and Coastguard Agency at their Southampton Headquarters, where he has responsibility for communications, planning, reputation management, and enforcement activity. In a private capacity he also offers his services as a Toastmaster and Master of Ceremonies for weddings and other functions. Until July 2010 he had spent 11 years as a school governor and 7 years as the Chair of Governors at Oakwood Junior School in Southampton.
  • Vivien Jones
  • Vivien Jones - President
  • Vivien is the founder and Hon President of the Nystagmus Network. After her son Sam was born with nystagmus in 1983, the lack of support for families prompted her to write to other parents and the group got off the ground in 1984. Vivien began her career as a journalist; she has just retired from the communications company Grayling where she was UK Chairman. Vivien has also chaired an NHS hospital trust and was for eight years a member of the UK Press Complaints Commission. Current roles include serving as a trustee on the Prince's Foundation for the Built Environment.
  • Katy Faulkner
  • Katy Faulkner - Vice chair and governance officer
  • Tanya Hairman
  • Tanya Hairman - Treasurer
  • Originally from Australia, Tanya Hairman has lived in London since 2003. Tanya was introduced to the Nystagmus Network when her young daughter was diagnosed with nystagmus in 2009, and volunteered as Treasurer from October 2010. Tanya currently works as a TV Producer, and is also a practising artist with a Masters of Art degree.
  • James Taylor
  • James Taylor - Website and IT
  • Steve McKay
  • Steve McKay - Press Officer
  • Steve is our volunteer press officer. Steve has nystagmus himself, previous experience of volunteering and has been a media co-coordinator for Save the Children.
  • Pam Jarmain
  • Pam Jarmain - Membership Secretary
  • Pam, our membership secretary as of January 2010, was born during the war in Weston-Super-Mare where her Father was in the RAF. She had several problems with her eyes, which caused nystagmus to develop. Her education was at schools for the blind, and later college learning Braille shorthand and touch-typing. She worked as a telephonist and later in Customer Service for a bank. Pam is married with three sons who all live in Australia. She has been sending out electronic copies of Focus for several years and also represents nystagmus on two committees.
  • Kathy Williams
  • Kathy Williams - Former chair (2009 - 2011)
  • Kathy is a retired academic with specialisms in West Africa and the Caribbean. She has atypical alternating jerk nystagmus.
  • Richard Wilson
  • Claire Entwistle - Database Manager

Volunteers

  • Sam Jones
  • Sam Jones: Volunteer education advocate
  • Having graduated in International Politics from the University of Wales Aberystwyth in 2005 Sam joined the House of Commons Library where he remains to this day, currently building an electronic archive for the Northern Ireland Assembly. Sam works as a volunteer educational advocate for the NN and has recently started an MSc in Information Science and Technology which he hopes may lead him to a career in the NHS. In his spare time he is a keen cyclist, fan of curry and the odd pint of Guinness.
  • Janet Radford
  • Janet Radford: Website shop
  • Janet was born in the 1940s and has been the volunteer behind the NN shop since summer 2011 with husband Jim helping out with computer queries. Janet has done clerical work in a hosiery factory, two years as nursery nurse and once her two children were old enough spent 14 years as a nursing assistant looking after long stay elderly patients in a psychiatric hospital. Janet has nystagmus due to optic nerve hypoplaysia ("small optic nerves to you and me"). She uses a 4x monocular telescope provided by the Wessex Sight Centre to see wildlife, destination boards when travelling and "generally do what anyone else does." She has since spent 14 years as a volunteer at the Sight Centre.

Employees

  • John Sanders
  • John Sanders - Information & Development Manager
  • As Information and Development Manager, John works three days a week for NN and is the charity's only paid employee. John has nystagmus himself and worked in London as a translator from German to English before becoming a journalist with the Reuters news agency. He wrote mostly about insurance, but in his spare time developed the character of Northwick the nystagmic bear. John now lives in Cardiff where, as well as working for NN, he is a volunteer with the local blind society and RNIB Cymru among other organisations.

© Nystagmus Network If you use information from this website, please tell people you got it from:
Nystagmus Network, UK. www.nystagmusnet.org