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In this issue ... celebrating nystagmus research

Recognition for Nikita, all those 'medical videos' and a successful UK research workshop, but first ...

We can help you feel connected

As we enter a new national lockdown, please remember that the Nystagmus Network is here for you with support and information and lots of opportunities to stay connected.

Please join the conversations in one of our Facebook groups for parents or adults living with nystagmus, email us for details of one of our upcoming zoom chats or simply drop us an email or give us a call if you need someone to talk to.


We're still here for you.

Contact the Nystagmus Network here

Congratulations, Nikita!

Nikita Thomas has been named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness).

Nikita, who works in nystagmus research at the University of Cardiff, was nominated by the Nystagmus Network and has achieved her award in the ‘Innovators’ category.

Cited for her innovative developmental work in the field of perimetry, the Nystagmus Network added: “Always engaging, professional and knowledgeable, Nikita is a very popular research delegate at the annual Nystagmus Network Open Day.”

Her academic supervisors at The School of Optometry and vision Sciences at Cardiff said: “Nikita’s work promises to have a significant impact on both the delivery of clinical eyecare and our understanding of the development of the human visual system.”

Read the full story here

The annual UK nystagmus research workshop

On Friday 2 October, the Nystagmus Network once again hosted the annual UK nystagmus research workshop.

This is an opportunity for researchers, clinicians and academics to get together to share their work and plan greater collaboration. They are, after all, all working towards the same goal. The workshop took place via zoom.

Read more here

Can you help Libby with her research?

Libby is a geography student in her final year at Loughborough University. Her dissertation aims to explore the experiences of young adults (18-25) in their local space / environment and the impacts on identity formation. 

The aim of her study is to increase awareness of the daily experience individuals with impaired vision have, be that positive or negative. It is inspired by her 2 younger sisters, who both have nystagmus. 

If you might be interested in taking part in Libby's study, or would like to contact her to find out more, please tap or click below.

Find out more here

Virtual Open Day - you loved it!

Feedback for Open Day 2020 has been universally positive.Thank you if you were one of the 611 people who joined us for our first ever virtual Open Day, for both the live sessions and the recorded presentations and interviews. You viewed the presentations 3,368 times!

"I loved the interviews with Joanne and Claire and all the medical videos, too."

"It was extremely well put together, just the right amount of information and very engaging."


"Just to say that the virtual nystagmus day is absolutely fabulous ... well done all."


In case you missed Open Day, you can still request the digital programme with links to all the interviews and presentations. 
Request Open Day programme here

The next Parents' Get Together

A zoom chat for parents and carers of children with nystagmus. Share experiences, make new friends, feel connected.

Tuesday 17 November at 7.30pm - everyone welcome!
Parents sign up here

Adults' Forum - congenital nystagmus


A zoom chat for adults living with congenital nystagmus. Share experiences, make new friends, feel connected.

Tuesday 10 November at 6pm - everyone welcome!
Adults with CN sign up here

Adults' Forum - Acquired Nystagmus


A zoom chat for adults living with acquired nystagmus. Share experiences, make new friends, feel connected.

Tuesday 24 November at 4.30pm - everyone welcome!
Acquired Nystagmus sign up here

Acquired Nystagmus or Oscillopsia?


The Nystagmus Network is supporting Professor Chris Harris and his team at the Royal Eye Hospital, Plymouth to further research into these complex and life changing conditions.

If you or anyone you know is living with either or both of these conditions, we'd love to hear from you. We can offer you support and you can help Chris with his study.

 
Find out more here

Nothing will stop us!

The theme of the Nystagmus Network virtual Open Day 2020 was the phrase ‘Nothing will stop us!”

That’s because we believe that nystagmus needn’t stop you from doing (almost) anything you want to do. 

A global pandemic didn't stop us from hosting our annual Open Day either. 

Nystagmus doesn't stop me ... was also the theme our Open Day 2020 COMPETITION!

Thank you to everyone who sent in a poem, a short story, a photograph, a drawing, a voice recording or a a video clip.


Here are just some of the best entries.
See more here

Nystagmus Network Christmas cards


We may not be able to have everyone round for Christmas this year, but we can still show our friends and loved ones we care, and support our favourite small charity, by sending them a jolly Christmas card.

Place your orders now!
Visit the Christmas shop here

Trustee and volunteering opportunities

As we celebrate Trustee Week and thank each and every one of our dedicated trustees for their hard work and commitment to the nystagmus cause, we offer you the opportunity to join them to help steer the charity's future.

Are you looking for a new opportunity to give your energy, time, skills and talent to support a small charity?

The Nystagmus Network is looking for people who would like to help the work we do as a volunteer, or join us as a Trustee to guide and direct the charity’s work.

The skills, talent and experience we would be interested in are:

  • Fundraising
  • Volunteer Management / Networking
  • Corporate Law
  • Clinical Practice
  • IT and Web Design

For people considering offering their services as a potential Trustee, the minimum time commitments are one full Saturday four times a year, an evening or daytime phone call every 6 weeks, attendance at the annual Open Day and support for Nystagmus Awareness Day. Trustees have particular legal responsibilities under charity law.

If you have time to give us, then please drop us an email at trustees@nystagmusnet.org with a brief summary of how you would like to get involved and the skills and experience you have to offer. We will then be in touch.

We welcome interest from people with and without nystagmus.

Apply here
Shop on AmazonSmile and Amazon donates to Nystagmus Network, at no cost to you.

Since April our supporters have raised over £70.


Thank you for making us (Amazon) Smile!
Easyfundraising gives free donations to the Nystagmus Network every time you order something with one of over 400 online retailers. It doesn't cost you a penny. Please support us by signing up today. 

Thank you to all our regular Easyfundraisers
Sign up here

Nystagmus Network weather lottery

Would you like the chance to win up to £25,000 every week for £1? Then please sign up to the Nystagmus Network weather lottery.

The proceeds help the charity continue to support the nystagmus community.

Sign up for the weather lottery here

Making your will?

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

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

Please remember the charity 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, the UK government will pay an additional 25p, provided you are a UK tax payer? Already donated? You can still sign up to Gift Aid today. Claims for Gift Aid can be backdated 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.

Please donate today

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


Read all the big stories first on the 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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