Weekly digest 12 November 2021
Social media posts, events and highlights of the past 7 days
Over on Twitter this week we encouraged our followers to nimnate us for a £1,000 donation through Ecclesiastical's Movement for Good. Meanwhile, on Facebook ...
Christmas presents for a nystagmus Mum or Dad?
Why not treat them (or yourself!) to a lovely journal to record all the happy moments and milestones achieved along the way. Created by Nadine Neckles, author, blogger and nystagmus Mum herself, the journals will help keep all those precious memories safe.
Monday Focus - LVAs
A low vision aid (LVA) is an optical device used to enhance, usually magnify, the vision. Adults and children with nystagmus can be assessed at an LVA clinic, usually located regionally, attached to an eye hospital or department and try different kinds of aids. Ask your Ophthalmologist or ECLO (Eye Clinic Liaison Officer) for a referral to your LVA clinic.
These little woolly companions wear cosy hats and scarves, all ready for the winter weather to come. They also have nystagmus and a null point. Order yours today to help raise awareness of nystagmus and to support the Nystagmus Network.
Tuesday Networking - Our responsibility to you
With over 13,000 people following our Facebook page, we take our responsibilities to the nystagmus community seriously. That's why we always seek to bring you the best sources of support and reliable, fact checked information and the latest news on nystagmus research.
If there's ever anything you need us to look into, just let us know and we'll get right on to it.
This is your safe place to ask questions.
We hope we will eventually find all the answers together.
Thank you for following us. It means a lot.
The Nystagmus Network team x
Wednesday Awareness - Why raise awareness?
Here at the Nystagmus Network we raise awareness of the condition every single day of the year, from our distinctive 'eye' logo to everything we do, not just on 20 June. That's because we believe that the more people who know about it the better. It means that adults and children who have nystagmus will get the help, support and services they need in education, employment, health, mobility and leisure and will enjoy a better quality of life as a result.
Every time you tell someone about nystagmus and every pound you raise in fundraising or sponsorship brings us one step closer to our goal.
Easyfundraising - spin to win!
Thank you to all our supporters who've entered #easyfundraising's Spin to Win giveaway - today we've won another 10p in donations! Woohoo! If you've not entered yet, please join in with the daily spins to increase our chances of winning a bit more! It's easy and completely FREE!
Thursday Research - Your nystagmus research questions answered
At the Nystagmus Network Open Deay 2021, a panel of clinical and research experts answered questions from members of the nystagmus community.
Kirsty asked: Is it the eye movements which cause poor vision and would stopping the wobble improve the vision?
Our panel replied:
Eye movements reduce the vision and reducing them might improve the vision just as when someone sees more clearly when using their null point. But an under-developed fovea also reduces the vision.
Dampening the eye movements can be achieved, using optical, clinical or surgical options, depending on the individual case, with varying degrees of success.
The brain is compensating for the eye movements so stopping them could cause wobbly vision. So, the best option remains to dampen the eye movements to an extent. It is a bit like the chicken and the egg. Which came first? The eye movements or the poor vision? In some cases poor vision has caused the nystagmus.
Answered by Helen Kuht and Nikita Thomas
You can help the Nystagmus Network continue to invest in research so that Helen, Nikita and all their colleagues can work towards bigger breakthroughs. Please donate today. Thank you.
Focus is out!
It's beginning to feel a bit like Christmas. With Parent Power workshops, shopping, Santa runs and Christmas cards, it's going to be a busy time.
Friday Fundraiser - Want to be a Friday fundraiser?
Don't worry, you don't have to run a 10k to support the Nystagmus Network. But, if that's what you want to do, we'll support you all the way.
Meanwhile, we have loads more slightly less energetic ideas for you in our A-Z guide to fundraising.
Download your copy from our website today to get inspired.
Thank you for your support!
Parent Power - November and December places booking now
Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.
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.