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Dates for your diary, L-DOPA and dancing


The Nystagmus Network has a very busy summer planned, with lots of dates for your diary: Nystagmus Awareness Day, the Nystagmus Network Ball and Open Day on the horizon. Please read on for further details.

But first, two items of research news ...

Nystagmus Network funding leads to discovery of new algorithm

 

A paper relating to a research project by members of the Cardiff University team and others, which the Nystagmus Network funded, has been formally published.

The report describes an algorithm which takes an eye-tracking recording and automatically separates it into its component parts (quick phases, slow phases and foveations*), allowing several measures related to the nystagmus to be calculated automatically (including frequency, amplitude, intensity and foveation period metrics). Automatic segmentation of the waveform also provides the basis for calibration of the eye-tracker (previously this could only be done by an experienced eye movement analyst).

Matt Dunn from Cardiff says: “We hope that this algorithm will provide the basis for more accurate monitoring of nystagmus in clinics. Being able to calibrate will (also) allow people with nystagmus to use personal eye-tracking systems such as those that allow people with physical disabilities to control their computer.”

*foveation means angling the eyes to focus on an object

Read the full scientific paper here

A potential treatment for babies with ocular albinism

Dr Helena Lee from the University of Southampton was happy to announce this week the publication of a first paper from the OLIVIA study which shows the potential for L-DOPA treatment to improve the vision in albinism.

This means that the sight of newborn babies with ocular albinism could potentially continue to develop and improve with treatment.

Delegates at the Nystagmus Network Open Day later this year will hear first hand from Helena on the progress of her work with L-DOPA.

Read the full article here

Please help us fund more research

Throughout the summer you can help raise funds for nystagmus research and complete your own personal challenge at the same time. Join Mary, Laura, Ellie and Alice and sign up this month to walk, jog or run your chosen path, anywhere from the Peak District to the Jurassic Coast.

Choose your challenge here

We've joined forces with parkrun UK to offer you the opportunity to take part in parkrun just about anywhere in the country, wearing your Nystagmus Network T shirt or wristband. What better way to raise awareness of nystagmus?

On Saturday 22 June adults can take part in a full park run. That’s 5k

CLICK HERE to find your park run

On Sunday 23 June children 4-14 years and their families can take part in junior park run. That’s 2k

CLICK HERE to find your junior park run

Park run is fully accessible to people with vision impairment. There are over 70 fully trained volunteer VI guides available, but all runs are VI friendly with or without guides.

Download your park run sponsorship form here.

Alternative Nystagmus Awareness Day activities


If you prefer, you can organise your own event on Nystagmus Awareness Day itself, Thursday 20 June, or during ‘Wobbly Week’ which runs from 17 to 23 June, including good old ‘Wobbly Wednesday’ on 19 June.
Get your wobbly inspiration here

Get your posh frock on!


Our wonderful volunteer event organiser, Ann-Marie is working her socks off to make the Nystagmus Network Ball a night to remember. Beginning with a drinks reception, followed by fun and games with the fabulous Wil Maudsley, you will enjoy a three course dinner and dancing till midnight with a DJ, all in the company of fellow members of the nystagmus community. There are some fantastic raffle prizes, too!

Details of the delicious menu have just been released, so please book your tickets today to avoid disappointment.
Book your tickets here

Just say yes to Cardiff


The Nystagmus Network is so excited about going to Cardiff for Open Day on Saturday 28 September.

The Principality Stadium, Cardiff

Join us in the Millennium Lounge for the most inspirational talks and presentations and meet up with adults, parents, children and young people affected by nystagmus over lunch on the Riverside Terrace.

Priority booking for members of the Nystagmus Network will open soon. We will keep you posted.
More Open Day details here

Free Open Day places for all members

Nystagmus Network members receive a free place at Open Day as part of their membership package.

Priority booking, for members only, will open soon. Members will be notified by email or letter.

Any remaining tickets, once member tickets have been allocated, will go on general sale a month or so later.

Annual membership of the Nystagmus Network is £25. To join or renew your membership, you can set up an annual Direct Debit for £25. Please contact Sara for a DD form. Alternatively, you can pay an annual subscription of £25 through our online shop or set up to pay by monthly giving (minimum of £2 per month) with CAFDonate.

Open Day tickets are expected to be priced at £32.

Join or renew your membership here

Thank you for shopping with Easyfundraising

Thank you to our 100 amazing supporters for shopping online with Easyfundraising. Your support really does make a difference. Together we've raised almost £700! 

This month Lyndsay is at the top of our leader board (our best shopper!) Next month it could be you.

So don't forget there are 3,300 shops and sites you can raise free donations with. All the travel companies are on there, too!


It's fundraising for free!

Sign up here

 

Sign up to our lottery!

One of our supporters was a big winner this week!

She won £250.

You could be our next £250 or £25,000 winner!

Sign up here

Please don't forget us

Remembering the Nystagmus Network in your will could  make a huge difference to the nystagmus community. It might help us fund that elusive piece of research which leads to a cure for nystagmus.

That would be quite a legacy, wouldn't it?

Please remember us in your will

Sign up for Gift Aid today! 

Did you know that for every £1 you donate to the Nystagmus Network and for every £1 of your annual membership subscription, we can claim an additional 25p back from the UK government, provided you are a UK tax payer? Already donated? You can still sign up today to help us claim your tax back.

You can sign up to Gift Aid by clicking the link below. Thank you.

Please sign up for Gift Aid here

Please consider making a donation 

The Nystagmus Network relies entirely on membership subscriptions, fundraisingdonations and gifts in wills to continue its important work, providing support and information to the nystagmus community, raising awareness and funding research.

We can't do any of this without your support.

Please donate today

Do you follow us on social media? Join in our daily conversations on Facebook and keep up with all the latest #Nystagmus news on Twitter.


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