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After 3 months and 4 days, Mike from Southampton completes his 3,000 km walk for nystagmus research.

Congratulations, Mike

Can you believe that it’s more than THREE MONTHS since Mike from Southampton set off on his crazy ‘wiggly walk’ the entire length of New Zealand to raise money for nystagmus research?

And he finally reached the end TODAY!

If you haven’t been following his progress along the way, you've missed a real treat. There's been some breathtaking scenery, lots of heart warming stories and, yes, quite a lot of singing, too!

The before and after pictures have their own story to tell. The photo above shows Mike back in December in his pristine Nystagmus Network T shirt preparing to set off on his Walk for Wiggly Eyes.

The picture below, well, sorry, all we can say is that it all got a bit wet in the Auckland area earlier this week.

We'll bring you the full story from the man himself as we welcome home a true nystagmus super hero.


Mike, you have done us all proud. Thank you. 

Show Mike your support here

Parents of adolescents with nystagmus: research participation opportunity

 

Ifigeneia Manitsa BEd, MSc, AFHEA (pictured) is a Psychology Researcher at Kingston University London. Her research is about the social and academic inclusion of adolescents with and without visual impairments.She has a Degree in Primary Education and a Masters in Special Education. Visual impairment has been her field of expertise for the past 7 years.

Her latest study is on the social relationships that sighted and visually impaired adolescents, aged 12-14 years, who attend mainstream schools or mainstream schools with special resourced provision, develop with their teachers and peers and the impact of these relationships on their school grades and classroom participation. An outline of the project is below.

Sighted and visually impaired adolescents aged 12-14 years will be asked to complete 3 questionnaires:

  • a demographic questionnaire
  • a questionnaire on the social relationship they have developed with their favourite teacher
  • a questionnaire on the social relationship they have developed with their closest friend in school

These questionnaires will take approximately 30-45 minutes. The main researcher is going to ask the questions and adolescents will answer them. The teachers the adolescents nominate as their favourite ones will be asked to complete a questionnaire on these students’ academic inclusion (test grades and classroom participation). This will take approximately 15 minutes to complete and they can do it in their own time. Additionally, we would like to have access to the academic grades that students have received in English, Maths and Science in their last report. Their teachers can share these with us and we will, of course, ask for parents’ and students’ permission.

The adolescents who participate in this study may have a visual impairment, but no learning or cognitive disabilities.

The questionnaires can be completed by phone, email, Skype or post.

Please contact us if you would like more information about Ifigeneia's study or click the link below to take part.

Take part here

Business as usual

As you will be aware, the worldwide coronavirus pandemic is having an impact in all areas of life. We sincerely hope that you are managing to keep yourself and your family healthy and safe.

As far as the Nystagmus Network is concerned, we continue to run our full information and support service, by phone, email and social media and to promote research, particularly Ifigeneia's project at Kingston University, London into social relationships of adolescents with impaired vision.

Sue was lucky enough to be able to attend the VIEW conference in Birmingham last Thursday and Friday, raising awareness of nystagmus among delegates and delivering a workshop on ‘nystagmus in the classroom’ to a full room of specialist teachers.

Sadly, that will probably be the last event we can attend for the next few months. Sara, Debbie and Sue continue to work from home as usual, delivering our services, developing new ones and, of course, planning Open Day 2020 on Saturday 3 October in Sheffield.

Whilst we continue to offer our services, we fear that our income from fundraising will be seriously depleted this year. Major events, such as the London Marathon and our Ultra Challenges are either cancelled or postponed, schools are likely to be closed during Nystagmus Awareness Day on 20 June and the coffee mornings, pub quizzes and raffles we rely on are unlikely to go ahead.

We know that some of you will be experiencing changes to lifestyle and income, too. If you need someone to listen, please don't hesitate to contact us.

Please support the Nystagmus Network in any way you can in these difficult and unpredictable times. Thank you.

Contact us here

Our Facebook Groups - keeping you connected

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

Order your 'mini me' today

Our lovely volunteer knitters have been lovingly creating lots of little woolly people. Each one is an individual, with its own hair and skin tone and its own choice of warm, woolly clothes. Each one also has nystagmus.

100% of the sale proceeds comes directly to the Nystagmus Network.

Order your mascot here

A huge thank you to all our easyfundraising shoppers for your support. Together, you helped us raise £65.40 in February simply by shopping through easyfundraising. 


Thank you so much!
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.

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Welcome to all our new members in 2020!

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