Please take a moment to nominate the Nystagmus Network for the chance to win a £1,000 donation. That’s enough to pay for a year’s supply of nystagmus information leaflets for families across the UK.
The competition is being run by the Benefact Group.
Please use the link below to nominate us. Thank you!
You can make a difference to the Nystagmus Network by simply selecting us as your favourite charity on Give at Checkout via PayPal. We could win up to £20,000 in match funded donations.
Please visit https://www.paypal.com/fundraiser/set-favorite-charity, search for the Nystagmus Network and select us as your favourite.
#OneTapBigImpact2023 see website for full Ts and Cs.
Thank you for your support!
Our Community is strong. Please help us grow it even stronger.
Giving Tuesday is a day when people and organisations from all over the world come together to support the causes and communities that mean so much to us all.
Last year, we set a goal of £500 and our amazing supporters came together and raised just over £600!
We know times are tough and many people’s situations have changed. As a charity, we too need help now more than ever to continue to offer support and information free of charge to the nystagmus community.
Please help by giving what you can – just £5 makes a big difference – on Tuesday 29th November.
Thank you for your support.
Nystagmus Network trustees donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal last December thanks to the generosity of our fundraisers and supporters.
Someone who contributed more than most is Southampton-born Mike Larcombe who, in 2020 completed his Walk for Wiggly Eyes, a three and a half month long adventure following the Te Araroa pathway and then, in 2021, cycled all around Tasmania for his Wiggly Walk 2.
In total to date Mike has raised a phenomenal £6,500 for nystagmus research.
THANK YOU, MIKE!
The £17,000 is being used to fund a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and four Cervical Range-of-Motion instruments (CROM) to measure head postures.
The new equipment will be used in both the clinics and the research labs at University Hospital Southampton.
Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”
This August the Nystagmus Network was finally able to meet with and celebrate the incredible achievements of a true nystagmus superhero, Mike Larcombe.
From December 2019 and for a total of three and a half months, Mike walked the entire length of New Zealand (yes! the North and the South Island!) following the Te Araroa pathway to raise funds for nystagmus research and awareness of the condition.
Along the way he endured very wet feet, a constantly rumbling tummy and often only the company of chickens!
As if that were not enough, in 2021 he was at it again, cycling (and singing!) all the way around Tasmania.
In total Mike has raised a whopping £6,500 for nystagmus research!
His feet were nice and dry this week as he chatted with Jay Self and Helena Lee, researchers and clinicians at University Hospital in Mike’s home town of Southampton along with Harshal Kubavat and Sue Ricketts from the Nystagmus Network. During their visit the group toured the clinics and research labs to find out where some of that hard earned fundraising money goes.
Charlie loves football. He also loves his team. When they were short of money to pay for the under 7s new kit, Charlie had the brilliant idea of asking the local bank. Banks have lots of money, don’t they?
Charlie’s letter arrived on Luke’s desk and then Luke also had a brilliant idea. He decided he would raise the £300 the team needed and let Charlie nominate his favourite charity as the team sponsors.
Luke says: “I love football myself and this letter really spoke to me. I wanted to help. So I decided to compete and raise the money to help this cause.”
Choosing a charity was the easy bit! Charlie has nystagmus and his whole family supports the Nystagmus Network. They completed the Welly Walk last June.
Luke completed a triathlon in April, raised £300 and Charlie and his team got their smart new sports tops, complete with the Nystagmus Network logo. Well done, Charlie and Luke!
If you’d like to share your nystagmus story, for Nystagmus Awareness Day 2022, please email us at [email protected]
If 50 people each walked 10 miles and raised £100 in sponsorship, that would be £5,000 for nystagmus research.
Why 500 miles?
That’s roughly the distance you’d cover if you walked from one UK nystagmus research centre to all the others. Let’s see if we can do it!
Starting at University Hospital, Plymouth, calling at The University of Southampton, Cardiff University, Moorfields, London, The University of Leicester, you’d eventually arrive at the University of Sheffield some 565 miles later. But you can walk just 10 miles.
What would £5,000 buy?
Here’s a list of just some of the things Nystagmus Network trustees could invest £5,000 in:
- diagnostic equipment for use in a research or clinical setting
- an academic post to focus on an aspect of nystagmus
- a brand new in person nystagmus research trial
How to set up your 10 mile walk
- Decide on your route – you can build up your 10 miles with lots of shorter walks over several days
- Set up your Justgiving page for your sponsors here; we’ll help you promote it
- Download a sponsor form here for your offline donations
- Tell all your friends and family about your walk
- Tell the Nystagmus Network!
These are some top tips by the Fundraising Regulator to help you give to charity with confidence.
Before giving, check the charity’s name and registration number.
Check whether a charity is committed to good fundraising practice by looking out for the Fundraising Badge .
Be cautious about people collecting for general charitable causes.
Look for the charity’s name, registered charity number and a telephone number on fundraising materials.
When donating online, exercise the same caution as with any other internet transaction.
Donate through a charity’s own website or through well-established fundraising platforms.
Skydiving is an extreme sport and not for the faint hearted, but it’s the perfect opportunity to ask your friends and family to sponsor you!
In 2018, Simon raised over £1,000 for the charity watched by friends and family, including his son, Charlie, who has nystagmus.
For more information and to set up your skydive for the Nystagmus Network, email as at [email protected].
We love to celebrate with you when you have a win on the Nystagmus Network weather lottery.
Join today and, for just £1 per week, you will have the chance to win £25,000 – and you’ll be supporting the Nystagmus Network, too.
So everyone’s a winner!