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In this issue ...
 

Common misconceptions about nystagmus

A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond.

They're now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both people with nystagmus (and their parents/carers) but also the general public.

The study will take the form of an online questionnaire and seek to understand both the public’s assumptions and understanding of what nystagmus is, alongside what people with nystagmus feel is commonly misunderstood or misinterpreted.

Do you have any suggestions for things which the research teams could ask to help highlight common misconceptions or assumptions about nystagmus? If so, please click the blue box below. Thank you.

Please share your comments here

Daniel joins the Nystagmus Network

The Nystagmus Network has appointed Daniel Williams, sight loss campaigner and founder of Visualise Training and Consultancy, to its committee of Trustees.

Chair of the charity’s trustees, Tim Cuddeford said: “We are delighted to welcome Daniel to the committee as he brings a comprehensive overview of the sight loss and optical sectors and first-hand knowledge of the challenges living with a visual impairment can bring. As a well-connected young entrepreneur with a strong social media presence, he will also help us to raise the profile of the Nystagmus Network and the support services we offer."

 

On taking up his new role, Daniel said: “I feel honoured to be part of a small charity that has the potential to support so many people with nystagmus. My younger brother was diagnosed with the condition at the age of one and, as an advocate for the sight loss sector, this appointment will help towards my aim of making the world more inclusive for people with visual impairments through increased opportunities and personal development.” 

Read more about Dan's work here

Thanks to everyone who raised a donation for the Nystagmus Network using #easyfundraising in January - together, we raised £30.55! 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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