Thank you Fiona, Jackie, Jane, Lyndsay, Rachel, Sofie, Sue, Tim and all our other lovely supporters for raising donations for the Nystagmus Network with easyfundraising! If you haven’t signed up yet, it’s easy and completely FREE. 6,200 shops and sites will donate to us when you use easyfundraising to do your everyday online shopping – at no extra cost to you! Every donation you raise makes a difference to us so please sign up and share today.
Take on a 50 km Ultra or a historic 25km – and make it an active Easter! From the Windsor Racecourse base camp 1500 adventurers will head out on looped routes through the Great Park with fantastic views of the Castle, on to Runnymede, along the Thames Path, and take in some wonderful countryside. You’ll get full support all the way, a few post Easter surprises, a celebration finish at base camp and a BBQ meal. It’s a great way to kick off the 2022 Ultra Challenge season and to get in shape for summer. The Nystagmus Network will part fund your place.
Until 28 February 2022 you can get 50% off your registration fee when using code NYCHARITY22 on all CHARITY SPONSORSHIP places.
The Royal Parks Half Marathon is a spectacular run through central London – the first and only one of its kind. The stunning 13.1 mile route takes in the capital’s world-famous landmarks on closed roads, and four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens.
Stephen ran the Royal Parks for the Nystagmus Network in 2021, raising £370.
The 2022 Royal Parks Half Marathon, presented by Royal Bank of Canada will take place on Sunday 9 October.
To gain your FREE PLACE for the Royal Parks Half in 2022 you will need to:
- have a close connection with nystagmus or have the condition yourself
- be willing to set up a Justgiving page for your sponsors
- commit to raise at least £250
If you would like to run for the Nystagmus Network, please complete and submit the form below. Thank you.
The amazing Mike Larcombe, nystagmus champion extraordinaire is at it again!
You will remember, of course, that in 2019/2020 Mike walked the entire length of New Zealand to raise awareness and funds for nystagmus research.
This New Year sees Mike embark on another ‘out of this world’ challenge.
Never one to let the grass grow under his feet, Mike, the self-styled “wiggly eyed warrior” in reference to his own nystagmus, is embarking on Wiggly Walk 2. The new ‘walk’ is actually a bike ride – around the entire island of Tasmania.
Mike says: “I will be riding a bicycle around Tasmania for Nystagmus Network because together we can help find a cure for nystagmus”.
For 12 days this Christmas, as part of Ecclesiastical’s movement for good , the company will be making £120,000 in donations to charities to help them deliver their vital work. Please nominate the Nystagmus Network for a chance to help us win £1,000! With that amount of money we could supply a lot of hospital clinics with nystagmus information leaflets for their patients.
This lovely scented candle is specially created for the Nystagmus Network by Oli at No. 14 The Wick to celebrate Nystagmus Awareness Day 2021. The scent is Bergamot and Sage using a blend of essential and fragrance oils.
The oils have been chosen for the following aromatherapy attributes.
BERGAMOT – Uplifting and refreshing. Reduces stress and anxiety
SAGE – Stimulating and soothing. Helps clarify the mind and promotes attentiveness
Oli says: “I wanted to play on the meaning of ‘sage’ too. As in, ‘someone who is wise and has attained this wisdom through experience’. I felt this embodied the charity and all that is stands for in sharing it’s knowledge, advice and support to its members.
“Clarity is something that the charity provided for me when our children were first diagnosed with nystagmus and the support provided certainly helped us through some difficult or challenging times.
“Most of all I wanted to capture a fragrance that was uplifting and positive which is something we always feel when we meet our Nystagmus Network family. Knowing we are not alone and that there is advice or support from a ‘wise sage’ if needed.”
Love and light, Oli x
220g soy wax candle
Approx. 40 hour burn-time
Matt White glass container
Sorry, but we can only ship candles to UK destinations
Twelve year old Georgie will be baking 100 cookies in honour of the memory of Captain Sir Tom Moore this weekend. That’s her #CaptainTom100 challenge to raise funds for the Nystagmus Network.
We’re so grateful for your support, Georgie. We know those cookies are going to be yummy!
To honour the memory of Captain Sir Tom Moore and his amazing fundraising legacy, Leon will be running 100 kilometers over the three day weekend to raise money for the Nystagmus Network research fund.
Thank you so much for your support, Leon and all the very best for your challenge.
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
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.