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Weekly digest 5 November  2021

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

Over on Twitter this week we heralded the launch of our #GivingTuesday campaign. Meanwhile, on Facebook ...

 
Monday Focus - nystagmus waveforms
Nystagmus waveforms describe the way in which the eyes wobble. Waveforms are very useful at the diagnosis stage and also help us understand how nystagmus affects vision.
Nystagmus eye movements begin with a slow phase. Sometimes the slow phase is followed by accelerating eye movements (called the fast phase). Alternatively, the eyes may oscillate smoothly back and forth. The different waveforms may be referred to as 'jerk' or pendular' . There are many different classifications of these movements which all help inform the ophthalmologist about the likely cause of the nystagmus.


Tuesday Networking Nystagmus Network Facebook groups
Nystagmus Mums and Dads can find other parents to connect with in the Nystagmus Network Facebook group for parents. If you're an adult  with congenital nystagmus there's a Nystagmus Network Facebook group especially for you. To those living with Acquired Nystagmus and / or Oscillopsia - you're not alone. Find friends in the Nystagmus Network Facebook group especially for you.

The Weather Lottery                                                                         We celebrated our second weather lottery winner in a row.


Wednesday Awareness - What is nystagmus? 
You can find lots of information and sources of support for congenital or acquired nystagmus on the Nystagmus Network website.                                   

Thursday Research - Your nystagmus research questions answered
At Open Day 2021 a panel of researchers and clinicians answered your questions about nystagmus research
Geoff asked: Is your research well-funded? If not, how can the nystagmus community best support you to secure funding? –
Funding for nystagmus research remains problematic and the emphasis must always be on the impact that research can have. People in the nystagmus community can help raise the profile of nystagmus and the need for more research simply by being members of the Nystagmus Network and making the charity an important representative of a significant patient body.
The charity itself has helped pump prime numerous pieces of research which can lead to greater results, thanks to fundraising.

Answered by Gemma Arblaster and Ifigeneia Manitsa


You can help the Nystagmus Network continue to invest in research so that Gemma, Ifigeneia and all their colleagues can work towards bigger breakthroughs. Please donate today. Thank you.

Friday Fundraiser -  Donna
Donna will be running her first ever half marathon next month and we're so honoured that she's chosen to use the opportunity to fundraise for the Nystagmus Network. Donna says: "I am running my first half marathon for Nystagmus Network because further research is desperately required." Thank you, Donna, we will make sure that every pound you raise goes directly into nystagmus research.


Parent Power - FREE courses for parents and carers on SEN
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.

Committee Meeting
Trustees and staff of the Nystagmus Network are gathering together in London this Saturday for their quarterly committee meeting. This will be the first time they have met in person since February 2020. All meetings in the mean time have been held online. There will be much to discuss and plan for the future, as usual and we shall also be welcoming those members of the charity who will be joining us via Zoom.

ENDS

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