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What Charity asked the Nystagmus Network for tips on how a small charity can make a big impact.

Making it as a small charity

The Nystagmus Network was founded in the early 1980s, by Vivien Jones, a young mum with a baby boy called Sam who was diagnosed with nystagmus when he was 3 months old. Vivien found a complete lack of information available for parents of a child with nystagmus. Today, we all take advantage of having immediate answers to questions via the internet, but back in 1983 there was no Google. Although there were umbrella charities which supported the visually impaired, such as the RNIB, even they had little or no information on nystagmus at that time.

Please read on to learn how Vivien set up the charity, the barriers she conquered along the way and the secret to her charity's success today. 

Read the full story here

We launch our Facebook Groups

The Nystagmus Network recently launched 3 Facebook groups to help members come together to share their experiences, their problems and their successes and offer each other help and encouragement when it's needed.

All 3 groups have Nystagmus Network staff members Sue, Sara and Debbie as admins to make sure everyone gets the information and support they need. They are joined by our trustees and volunteers from time to time, depending on the subjects under discussion.

Join our Facebook Parents’ Group here

The Nystagmus Network Facebook Group for parents of children and young people with nystagmus. Share your experiences of diagnosis, early years and education support.

Join our Facebook Adults’ Group here

A Nystagmus Network Facebook Group for adults living with acquired or congenital nystagmus. Share your experience of employment, sports and leisure, getting around and general day to day living.

Join our Facebook Friends’ Group here

A Nystagmus Network Facebook Group for our fundraisers, members and supporters.

To keep up to date with all our news and multiple posts daily, please visit

our Facebook Page

All documents updated for 2020

All our free to download information booklets have now been reviewed, revised and updated for 2020. We have information for parents and adults living with acquired or congenital nystagmus. New this year is our guide to nystagmus and employment and, of course, there's our ever popular booklet on nystagmus and driving.

Download your free documents here

Thank you to everyone supporting us by shopping online through Easyfundraising! All your favourite retailers - all the best prices.

Together we've already raised over £1,000!

If you're not supporting us yet, please take a moment to sign up for FREE. When you do, we'll be entered to WIN a £500 donation and 4,000 shops and sites will donate to us for FREE every time you use #easyfundraising to shop online! 


Thank you!
Sign up here

Nystagmus Network weather lottery

Whether it's raining outside, snowing or blowing a gale you can get a warm feeling inside and the chance to win up to £25,000 every week for just £1 simply by signing up to the Nystagmus Network weather lottery.

The charity receives every single penny of the profits.

Please support us. Thank you.

Sign up for our weather lottery 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. We can backdate our claim up to 4 years.

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.


Read all our news first on our BLOG.

If you have any comments or would like to see your story included in a future edition of Focus, please contact us today.


Email: info@nystagmusnet.org
Phone: 01427 718093

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Members of the Nystagmus Network receive a fortnightly digital newsletter directly into their inbox. We believe it's a great way to keep them up to date with all the latest nystagmus news, events and research participation opportunities.

This issue of Focus is for our members only. 

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Welcome to all our new members in 2020!

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