Category: Charity highlights

Captain Tom 100 logo, with an image of Captain Sir Tom showing the thumbs up

Nystagmus Network supporters invited to celebrate Captain Sir Tom’s achievements in special fundraising event


New fundraising initiative over Captain Tom’s birthday weekend of Friday 30 April to Bank Holiday Monday 3 May to celebrate his life and amazing achievements  

Captain Tom 100 invites people all over the world to take on a challenge
based around the number 100 to raise funds for charity 

Following the outpouring of heartfelt messages since the death of Captain Sir Tom Moore on 2 February, his family pledged to celebrate his life with an event that everyone, in the UK and around the world, could be involved in. That event is the Captain Tom 100 and the Nystagmus Network is proud to be inviting our supporters to take part. 

The Nystagmus Network, like many other charities, has been hugely impacted by the Covid-19 pandemic. It’s had a catastrophic effect, with the cancellation of thousands of fundraising events and the loss of billions in income.

Captain Tom 100 offers Nystagmus Network supporters, of all ages and abilities, the opportunity to raise crucial funds for our charity, while at the same time celebrating Captain Tom’s generosity of spirit, the hope and joy he brought to millions, and his sense of fun.

How it works

It’s so simple. All participants need to do is dream up a Captain Tom 100 challenge based around the number 100 and do it at any time and anywhere over Captain Tom’s birthday weekend – starting on Friday 30 April through to Bank Holiday Monday 3 May. 

The challenge could be walking 100 steps or running 100 metres, scoring 100 goals, baking 100 cakes, climbing 100 stairs, hopping 100 laps of the garden, building 100 sandcastles, writing a 100-word poem, flipping 100 pancakes – anything at all, inside or out. 

Once supporters have chosen their challenge, they can fundraise or donate to the Nystagmus Network and share their 100 on social media, using #CaptainTom100 

Captain Tom’s daughter, Hannah Ingram-Moore, said: “We are so grateful for the incredible support we have received since my father started his record-breaking fundraising walk and that his message of hope was shared with the world. Captain Tom was very proud to be able to leave behind the growing legacy of his Foundation. We know he would love the idea of inviting everyone to get involved and share their Captain Tom 100 so that together we can ensure ‘Tomorrow will be a good day’. We look forward to celebrating with you on what would have been his 101st birthday weekend – it’s going to be fun!” 

Sue from the Nystagmus Network says: “We are so grateful to Hannah and the Captain Tom Foundation for this initiative to help beleaguered charities and especially to Captain Sir Tom himself for the hope and inspiration through dark times. We know our supporters will enjoy some wonderfully fun and creative Captain Tom 100 challenges.”

Find out more at CaptainTom100.com 

Join the Captain Tom 100 for the Nystagmus Network here

VMLM image of runners competing in the London Marathon physical race.

Nystagmus Network runners to be part of world’s first 100,000 person marathon

50,000 runners to take on world’s biggest virtual marathon on Sunday 3 October with 50,000 runners to tackle the traditional London Marathon route on the same day

With the results of the 2021 Virgin Money London Marathon Ballot announced recently, the Nystagmus Network has 3 places for anyone who wants to raise crucial funds while making history as part of the world’s first 100,000-person marathon.

Following the announcement that London Marathon Events plans to stage the world’s first 100,000-person on Sunday 3 October, the Nystagmus Network is inviting its supporters across the UK to be a part of it by running to raise funds in its name.  

On Sunday 3 October 50,000 participants will take on the traditional course from London’s Blackheath to The Mall – an increase of more than 7,000 on the previous finisher record – while another 50,000 people around the globe run the 26.2 miles on the course of their choice, anytime from 00:00:00 to 23:59:59 BST, in a virtual event.   

The physical and mental health benefits of being active have been brought sharply into focus during the pandemic, and this biggest-ever London Marathon offers more people than ever before the chance to experience these benefits while raising much-needed funds for charity.  
The Nystagmus Network has THREE places available in the virtual event and is encouraging anyone who was unsuccessful in the ballot to contact them for a chance of taking part.  

Hugh Brasher, Event Director of London Marathon Events, said: “With the national vaccination programme underway, we are delighted to announce our exciting plans for the world’s first 100,000-person marathon. The London Marathon is the most popular marathon on the planet, with a world record 457,861 people applying in the ballot for a place in the 2020 event, and the incredible success of the 2020 virtual event shows the huge appetite to be part of the world’s greatest marathon.”

Nystagmus Network places in the virtual Virgin Money London Marathon are available on a first come, first served basis, but priority will be given to applicants who are members of the charity.
3 children reading a book together. They are all wearing Nystagmus Network T-shirts.

Looking forward to 20 June

We’re launching something BIG for Nystagmus Awareness Day 2021

But first, a question. Who’s your favourite children’s author?

David Walliams? Eva Ibbotson? Onjali Rauf? Eoin Colfer? Malorie Blackman? Adam Blade? J K Rowling? Jacqueline Wilson?

Please contact us with the name your child’s or your favourite children’s author

THANK YOU

Nikita smiles for the camera

Congratulations, Dr Thomas

The Nystagmus Network is sending huge congratulations to the newly qualified Dr Nikita Thomas. Dr Thomas achieved her PhD this month.

Nikita is well known to members of the Nystagmus Network for her engaging personality and confident presentations on her latest nystagmus research.

On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). She was nominated by the Nystagmus Network and her senior colleagues at the School of Optometry and Vision Sciences, Cardiff University for her innovative work in perimetry.

We’re sure that Nikita has a brilliant nystagmus research career ahead of her. With her PhD behind her she can now concentrate on her post-doctoral career.

Nikita says: “I never thought this day would actually come! I passed my PhD viva and I’m officially Dr Thomas. I was just an average kid at school who raised eyebrows when she chose science at A-levels, and now I’m a fully-fledged scientist. Amazing feeling.”

Congratulations, Dr Thomas!

Sam Jones

Sam’s challenge of a lifetime

Nystagmus Network Trustee, Sam Jones will be cycling 500 miles around the North Coast of Scotland in June this year to raise money for the Nystagmus Network.

It’s the ultimate road trip and the challenge of a lifetime.

What people may not realise is that Sam has nystagmus himself and is acually the reason the Nystagmus Network charity was formed.

Find out more about Sam and his trip in this video

Sponsor Sam’s North Coast 500 ride here

Tim stands by a Christmas tree. He is holding a glass of wine and wearing a strand of tinsel around his shoulders.

A Christmas message from Tim

Nystagmus Network Chairman, Tim Cuddeford has sent a Christmas message to members of the Nystagmus Network.

Tim spoke of the challenges that 2020 has brought for everyone, not least the nystagmus community, but also highlighted the successes the charity has been able to achieve, thanks to the support of our intrepid fundraisers and donors and the generosity of National Lottery players and those who donated to the charity’s BBC Radio 4 appeal. The team has continued to provide support and information services, albeit virtually, and even fulfil research investment commitments, whilst adapting services to meet growing and changing needs.

The charity looks forward to a happier, healthier and safer New Year for all.

If you would like to join the Nystagmus Network as a member, you can find out more here

Membership of the Nystagmus Network

Children pointing at a computer screen.

Thank you for donating to our BBC Radio 4 appeal

Thank you to everyone who gave to our BBC Radio 4 charity appeal in June this year. The appeal raised £9, 230.

You can read what a difference the appeal has made to the charity and the nystagmus community on the BBC website here where you can also listen again to Richard Osman presenting the appeal on behalf of the charity.

Thank you, Richard

Read our appeal story here

Zoe wears a care worker's uniform and a face mask pulled down under her chin for the photo.

Thank you, Zoe

It’s fitting that our final nystagmus hero of 2020 is someone who has been working tirelessly all year looking after some of our most vulnerable people.

Zoe is a care supervisor and head house keeper in a care home, working over 40 hours a week. She was born with nystagmus and optic atrophy. She struggles every day with eye pain and headaches and trying to concentrate when her eyes wobble a lot, but she works hard and does an amazing job.

She sometimes feels alone, because she’s never met or spoken to anyone with the same condition. A lot of us can relate to that.

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020  

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Mike wears his Nystagmus Network T short and smiles for the camera

Thank you, Mike

What can we say about Mike that hasn’t been said already? He endured so much for the nystagmus cause this year – including very wet feet, a constantly rumbling tummy and often only the company of chickens!

But Mike still walked 3000 miles to raise £2,500 for the Nystagmus Network. A-m-a-z-i-n-g!

And after all that he even dropped in to our Night in with the Nystagmus Network to entertain us all. Thank you, Mike.

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020  

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU