A mother’s desire to meet people going through the same experience, was the motivation for the founding of a support network for parents and professionals interested in the eye condition nystagmus. Now, thirty one years later her son Sam is running the Virgin Money London Marathon 2015 for the charity he is a trustee of, which has become the Nystagmus Network.
Having nystagmus means that Sam Jones’ eyes are constantly moving. However, that has not stopped him from having a successful career in the civil service, currently working in Westminster. Sam demonstrates that most of the things his sighted friends can do he can do too, riding a bike and kayaking for example. Sam’s love of personal challenge saw him complete a triathlon and a marathon last year.
You can sponsor Sam in the London Marathon through his online giving page at http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=SamuelJones2.
Sam Jones said; “I think it is a really fantastic motivational thing for other people with Nystagmus to see people with the condition doing these kinds of things and enjoying it. In the 1980s it was hard for my mum, very little was known about nystagmus. By running in the London Marathon I can make a difference to families in the same situation she was in thirty years ago.”
Richard Wilson, Chairman, Nystagmus Network said: “Without Sam there would be no Nystagmus Network. That we are here today is a credit to Vivien Jones, our President. It is because of her perseverance and determinations that people like Sam who are born with nystagmus are able to achieve such great things. Thanks to Vivien and Sam there is better support, advice and undressing of the eye condition.”
Sam Jones is not the only person running the London Marathon for Nystagmus Network. Jon Cartwright, Lisa Walker, and Wesley Pullen all have a personal connection to the eye condition.
NN is the UK’s leading charity for nystagmus. NN provides support and information as well as encouraging and funding research and raising awareness of the condition.
For more information about Nystagmus Network, contact John Sanders, Information and development manager, email: firstname.lastname@example.org Tel: 029 2045 4242. Helpline: 0845 634 2630, email@example.com website: http://www.nystagmusnet.org