Weekly digest 19 November  2021

Social media posts, events and highlights of the past 7 days

Elsewhere this week we began to implement our new membership campaign. Meanwhile, on Facebook ...

Parent Power - November and December places booking now
Parents and carers of children and young people with nystagmus are invited to attend one of a brand new series of FREE Parent Power webinars on SEND. Links below.
Each webinar will introduce parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.
Each session will be held by our lovely qualified and experienced trainer, Karen from IPSEA (the Independent Provider of Special Education Advice), supported by Sue from the charity staff and our volunteer education advocate, Claire.
Courses run from 10am to 2.45pm on Friday 19 November and Friday 10 December.

Monday Focus - looking closely
Many children and adults with nystagmus, though not all, prefer to look at things really closely - especially the TV, books, toys, food packaging and so on. The usual reason for this is that the nystagmus eye movements actually decrease or 'dampen' when the eyes converge (both eyes point in towards the nose a bit). This improves vision to some extent, so getting very close or moving something close to the eyes is a great way to see better and will not harm the sight.
Another reason is that something close to the eyes looks bigger and is easier to see. This is the case for lots of people with nystagmus, though by no means all, who are also short sighted or myopic.
Any refractive errors, such as short and long sight or astigmatism, which are also present alongside the nystagmus, can and should be corrected with glasses or contact lenses, so that the vision is as good as it can be.

Tuesday Networking your November forums
You are warmly invited to join us online for our monthly get togethers this November.
Parents, Tuesday 23 November at 8pm
Adults with AN, Wednesday 24 November at 5pm
Adults with CN, Thursday 25 November at 7pm
We look forward to having you with us.

Wednesday Awareness - Please help us raise awareness of nystagmus and the work of the Nystagmus Network
Next time you visit your Optician, Ophthalmologist or Low Vision Clinic, please take a supply of Nystagmus Network information leaflets, postcards or business cards with you. This will help spread awareness of nystagmus and help newly diagnosed patients to find information and support from the charity. Order your FREE supply from our online shop.

A Guinness World Record holding family celebrates their identity with albinism
With thanks to Naseem and all her family members for allowing us to share this link to their recent appearance on This Morning with Holly and Phil.
Thursday Research - The Nystagmus Network and nystagmus research
The charity has been supporting nystagmus research since the 1990s and we have seen a lot of progress made over the past few decades. We have funded equipment, trials, research projects and researcher salaries. We have hosted national and international research workshops. We have recruited research trial participants. As the patient representative member of NUKE - the Nystagmus UK Eye research group, we are well placed to ensure that nystagmus research can attract more funding, that the patient voice is properly represented and that nystagmus remains a hot research topic. You can find out more about our involvement in nystagmus research on our website.

Friday Fundraiser -  Wiggly Walk 2
The amazing Mike Larcombe, nystagmus champion extraordinaire is at it again! Who could forget that in 2019/2020 Mike walked the entire length of New Zealand to raise awareness and funds for nystagmus research? This New Year sees Mike embark on another ‘out of this world' challenge. This time, Mike, the self-styled “wiggly eyed warrior” in reference to his own nystagmus, is embarking on Wiggly Walk 2. The new ‘walk’ is actually a bike ride – around the entire island of Tasmania. Mike says: “I will be riding a bicycle around Tasmania for Nystagmus Network because together we can help find a cure for nystagmus”.


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