Copy

Nothing will stop us!

The theme of the Nystagmus Network virtual Open Day 2020 is 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.

So this week we’re launching our Open Day 2020 COMPETITION!

To enter, all you have to do is show us what nystagmus doesn’t stop you from doing. Your competition entry can take any form you like. It can be

a poem

a short story

a photograph

a drawing

a voice recording

a video clip

Send your entry with your name, age (if under 16) and the message “Nystagmus doesn’t stop me …” to info@nystagmusnet.org by no later than Saturday 31 October. The best entries will feature on our website and on our social media.


Annual subscription is £25. This helps keep the charity going and enables us to keep funding nystagmus research.
Enter the competition here

Meanwhile ... the first ever Nystagmus Network virtual Open Day is nearly here!


Please join us for a packed programme of inspirational and informative presentations.

All recordings will be available from 3 until 31 October, but you must register to be able to view.

Don't miss it!
Register here

Joanne Roughton-Arnold

 

Violinist, soprano, opera impresario and Nystagmus Network member, Joanne Roughton-Arnold chats with Nystagmus Network’s Sue on Saturday 3 October as part of the Nystagmus Network virtual Open Day 2020.

Hear Joanne talk about her experiences of her childhood and offer inspiration to young people with nystagmus dreaming of a career in the performing arts.


Don't miss Joanne on 3 October
Book for all Open Day presentations here

Sometimes we all need more marshmallows

 

In her presentation for the Nystagmus Network virtual Open Day 2020, Alison Blackman QTVI will talk about resilience and how to boost it.

Resilience is the ability to overcome adversity, reduce stress and bounce back from setbacks. In her presentation, Alison explains how to boost resilience in young people with nystagmus.

Find out how you can help a young person with nystagmus feel more like marshmallow man.


Booking continues. Everyone welcome!
Book for all Open Day presentations here

Visiting a High Street Optometrist

What happens when you’re discharged from the hospital eye clinic to an optician’s on the High Street?

In their presentation for the Nystagmus Network virtual Open Day 2020, Optometrist, Sarah Arnold and Dispensing Optician, Jayshree Vasani answer this and all your other questions about the services available at your local optician’s.


Booking continues. Everyone welcome!
Book for all Open Day presentations here

Launching Nystagmus Youth on Open Day 2020

Did you know there's a completely new place for teens and young people with nystagmus to connect, feel empowered, share their story and get involved?

It's called Nystagmus Youth. It's a brand new Instagram account run by Nystagmus Network volunteers Ahrian Taylor and Jaina Patel.

Follow Nystagmus Youth here

Parent's Forum on Open Day

A zoom chat led by Nystagmus Network trustee and volunteer, Marie Travers, herself a nystagmus parent. Your chance to meet up and share notes with other parents and carers of children with nystagmus.

Saturday 3 October at 2pm - everyone welcome!
Parents sign up here

Adults' Forum - congenital nystagmus


A zoom meet up led by Nystagmus Network trustee and volunteer, Dan Williams, an expert in accessible employment. Your chance to meet up and share notes with other adults living with congenital nystagmus.

Saturday 3 October at 3pm - everyone welcome!
Adults with CN sign up here

Adults' Forum - Acquired Nystagmus


Professor Chris Harris from the Royal Eye Infirmary, Plymouth, answers your questions about Acquired Nystagmus and Oscillopsia. 

Saturday 3 October at 4pm - everyone welcome!
Acquired Nystagmus sign up here

Education advice on Open Day

Members of the Nystagmus Network can book a one-to-one telephone consultation with Frances Lilley, our volunteer education advocate, about special education support provision for your child.

Places are limited and for members only.

Benefits advice on Open Day

Mike Hughes, our volunteer benefits adviser, is also offering one-to-one telephone consultations about nystagmus and DLA or PIP applications or appeals for you or your child.

Places are limited and for members only.
Please join us today

Annual General Meeting


The AGM of the Nystagmus Network takes place at 5pm on Saturday 3 October. This is an online event, giving members the opportunity to exercise their right to vote. 

Saturday 3 October at 5pm


If you would like to become a member of the Nystagmus Network and enjoy the full privileges of membership, please join us today.
Annual subscription is £25.
Please join us today

Trustee and volunteering opportunities

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

Ask us anything - we're here for you.

Whether you're worried about face masks and your field of vision, going back to school or who you can and can't meet up with - we can help.
Contact us with your question 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!
If you're not yet signed up to raise free donations for the Nystagmus Network every time you shop online, please sign up to Easyfundraising. You'll find all your favourite online retailers at all the usual prices.

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

You can unsubscribe from Focus

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

This edition of Focus is for all our subscribers.

Please remember that there is an unsubscribe button at the bottom of each and every issue, so if, at any time, you decide you no longer wish to receive Focus, please simply click the link.

Missed any issues?
You can read back numbers in the online archive.

 

Welcome to all our new subscribers!

Unsubscribe from this list
Copyright © 2020 Nystagmus Network, All rights reserved.


Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.