Our Captain Tom 100 challenge,                Raindrops and Wellies - here comes summer!

Congratulations to Leon and Georgie

Leon and Georgie completed their Captain Tom 100 challenges over the Bank Holiday Weekend for the Nystagmus Network 

Leon ran 100 kilometers in 3 days and has raised £201 towards the charity's research fund and 12 year old Georgie has been baking 100 cookies and raised £465 to support children living with nystagmus. Huge thanks to both of them for keeping Captain Sir Tom's legacy of love and hope alive.

You can still sponsor Leon or Georgie

Sponsor Leon here
Sponsor Georgie here

The Welly Walk for Raindrops

Please join charity supporters Shelley, Bethany and Melinda and walk 5k in your wellies for nystagmus on Saturday 19 or Sunday 20 June

To mark Nystagmus Awareness Day 2021 you’re invited to take part in the Welly Walk for Raindrops. Help raise awareness!

Whether it’s raining or not, we want you to join in the fun and walk 5k for nystagmus in your wellies on Saturday 19 or Sunday 20 June. Get the whole household along, including the dog and get sponsored.

Money raised from sponsorship of your Welly Walk will go directly into the Nystagmus Network research fund to help give us all hope for the future.

Prizes for everyone who raises £100 or more!
Set up your Welly Walk Justgiving page here

Meet an author

Three well known children's authors are hosting Nystagmus Network online workshops for young writers and illustrators this summer. Places are free. Book early to avoid disappointment. Suitable for children aged 7 years and up, with or without nystagmus.

Sorry, you've missed the first workshop with Helen Rutter, but there are 2 more to come.

Tim Pearce

Tim is a Sunday Times best selling author … in his dreams. Described by many as creative, passionate and short. In his spare time, when not writing, Tim is a football coach at Camberley Town Youth Football Club which has provided much of the inspiration for his books, including Secret Agent Striker. Tim’s mission is to create stories that keep children’s attention, with enough mystery to leave them wanting to read more, encouraging them to put away technology and use their imagination, whilst hopefully finding a new love for reading.

Monday 10 May  4:30 – 5:30pm

Book Tim Pearce workshop here
Claire Alexander

Claire lives in London and is a picture book author and illustrator. She runs courses on creating picture books as they are her passion.
As a child she pored over illustrations in picture books and loved drawing from an early age. She remembers being asked by friends to draw rabbits for them, but found reading very difficult. She only learned she was dyslexic and dysgraphic much later on in life. That explained her frustration and humiliation in the classroom and on the scrabble board. She wrote her book Back to Front and Upside Down based on her experiences, to help children overcome the shame of asking for help. She's also the author of A Little Bit Different and a brand new book, A Little Bit of Courage.

Thursday 17 June  4:30 – 5:30pm

Book Claire Alexander workshop here

Story writing and drawing competition

for children aged 5 to 14, with or without nystagmus

The Nystagmus Network Raindrops children's competition celebrates the wonderful creativity of children’s writing and illustration.                                                                   
There will be prizes for each age category and the chance to join workshops with some of your favourite children's authors and illustrators along the way.

The best stories and drawings will be published in a special book which will be available to purchase from September 2021.


Closing date: Saturday 19 June

For competition details please click below.

Raindrops children's competition details

Photography competition for adults:

The Nystagmus Network Raindrops competition for adults gives you the opportunity to get creative with your camera and capture the essence of raindrops.

There will be prizes for the winning entries and all photographs will feature in a virtual exhibition for Nystagmus Awareness Day and at a physical exhibition at Open Day 2021 in Sheffield on Saturday 25 September.

For competition details please click below.

Raindrops adults' competition details
Why Raindrops?

On Nystagmus Awareness Day 2020 Josh shared with us his nystagmus success story for our ‘How amazing are you?’ campaign. He’s a primary school teacher, a Masters graduate and an accomplished musician and singer.

Josh says: “I think it’s really important to say that if you’re born with nystagmus, being visually impaired is normal. You’ve never known any different. You even forget that other people can see better than you. I only found out a couple of years ago that people can see rain. I can’t see it because of my nystagmus. I’d always assumed it was invisible to everyone.”

Thank you, Josh, for the inspiration.

Still to come in this issue
  • don't miss your chance to run the virtual London Marathon for the Nystagmus Network this October
  • dates of our May forums for parents and adults with congenital or acquired nystagmus

FREE PLACES in the virtual VMLM

We still have a couple of additional free run places in the virtual Virgin Money London Marathon on Sunday 3 October 2021. If you're ready to run 26 miles in your local area and would like to do it for the Nystagmus Network, please apply now.

Apply now

Nystagmus Network online get togethers

Begun in March 2020 during the first lockdown, our monthly online Zoom meet ups are proving as popular as ever - and we have no plans to close them, even as lockdown two eases.

We will get back to local, regional and national events as soon as we can, but until then we think this is a great way to keep members of the nystagmus community connected. Please join us online.

May Parents' Forum

The next virtual Parents’ Forum is at 8pm on Tuesday 11 May. Share experiences, make new friends and ask all your most burning questions.
Request to join the Parents' Forum here

Adults' Forum - Acquired Nystagmus

The next virtual AN Forum is at 5pm on Thursday 20 May. Share experiences, make new friends and ask us anything you like.
Request to join the AN Forum here

Adults' Forum - Congenital Nystagmus

The next virtual CN Forum is at 7pm on Tuesday 25 May. Share experiences, make new friends and feel free to ask us anything.
Request to join the CN Forum here

Did you know? You can now donate your unwanted books, DVDs, CDs and games to the Nystagmus Network

Download the Ziffit App

Scan your unwanted stuff

Nominate the Nystagmus Network to receive your donation

Box it up

Print your label

Contact free collection

Clear Your Clutter here
Thank you to our Easyfundraising shoppers. You've raised £153.02 in the latest quarter. That's enough to cover our phone bill for the Information and Support Line for six months.

Easyfundraising gives free donations to the Nystagmus Network every time you order something online with one of over 400 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
Are you ordering books, games or tech online?

If so, please use  AmazonSmile and Amazon donates to Nystagmus Network, at no cost to you.

Thank you for making us (Amazon) Smile!

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

Considering writing your will?

Remembering the Nystagmus Network in your will, once your nearest and dearest have been thought of, 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 - THANK YOU

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

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

Phone: 01427 718093

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