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].
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.
Read more about Stephen’s run here.
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:
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”.
Nystagmus Network Vice-chair, Peter Greenwood, was delighted to announce the ‘nystagmus champions’ of 2021 at the end of Open Day party on 25 September.
Tyler Urquhart
The Urquhart family are, quite literally, tireless supporters of the Nystagmus Network.
This year they walked ran or swam 200km over 30 days. Everyone took part, even the dog!
We like to encourage children and young people to own their nystagmus and help us raise awareness on Nystagmus Awareness Day.
11-year-old Tyler always goes one better than that. In previous years he’s organised a sponsored school walk and a quiz and even approached local businesses for prizes for the winning and losing teams.
This year he was hard at it once again, manning a stall in his Nystagmus Network T-shirt, helping his family smash their £250 fundraising target. We hear he did a lot of the running, walking and swimming, too! Well done, Tyler.
Sarah Mills
There aren’t many people in Derbyshire who haven’t heard of nystagmus. That’s all down to one woman, Sarah Mills.
Sarah has been running for the Nystagmus Network for a number of years and achieving some really great press coverage along the way.
This July she excelled herself, completing the Peak District Ultra Challenge – 100km in 24 hours.
Not only that, but she persuaded scores of local businesses to donate raffle prizes, too.
Sarah has raised over £2,000 this year, for the nystagmus community and for her beautiful daughter, Delilah.
James Singleton
We first heard from James when he contacted the charity in December 2020 to let us know he’d signed up for the 19-21 challenge. James’s challenge was to run 300km in January 2021. He was doing it for his son, his ‘little champ’.
This being James, he got a whole lot of mates involved. There weren’t many people in Jersey who hadn’t seen a bright blue T-shirt go flashing past by the end of the month.
Together they raised over £1500.
In June 2021 James was at it again, running the Canaccord Half Marathon in Jersey, with his sister, Laura. Together they raised another £680.
In September James held a Nystagmus Network charity day at his golf club. James and his fellow golfers raised over £5,000 and a very good time was had by all.
I was born with CN and for the most part consider myself to be lucky compared to many in our group.
Service to others has been a significant part of my life.
Recently, as Chief of Staff of my state’s second largest agency I was responsible for leading the development of a comprehensive employee wellness program. This program has become a model for other agencies like mine nationwide.
In addition, I lead the effort to develop a CQI process that saved state taxpayers millions of dollars.
Our agency’s employees’ commitment to helping others resulted in raising hundreds of thousands of dollars for Special Olympics athletes during my tenure.
One of my biggest joys is riding my Harley Davidson.
Our challenge is to not accept the limitations others set for us, and strive to be the best we can be!
Wyatt has always had this positive outlook. He is determined, smart, and gives EVERYTHING his all!
When he was 4 months old he was diagnosed with Nystagmus. We as parents were told that he would never ride a bike, play sports, or even read a book. Everything he would do would be a challenge for him.
With that, my husband and I encouraged Wyatt. Whatever his passion he always tried. He always gave it 110% and succeeded!
Wyatt is 9 now. He loves his bike, rollerblades, driving the go-kart and his FAVOURITE thing to do is sit down and read a good book!
Words cannot describe how great Wyatt is doing! I can’t wait to see what the future holds for him!
I am Grayson and I am 5 on 18 June. I have Ocular Albinism and Nystagmus. When I started school in September, I was very scared and very nervous and was very sad because I was lonely and didn’t have any friends. I have now met lots of new friends and even learnt to write my name and read some small words. One thing that makes me sad about my Nystagmus is not being able to drive my own car but my Sissy said she is going to buy a Tesla in black when she is a grown up and drive me everywhere, so that makes me really happy.
Note from Mum:
Grayson is so kind and loving with a heart of pure gold. They broke the mould with him. I could burst with pride at the obstacles he faces but is never held back. He really is an amazing little boy. The best. It just goes to show if you believe in yourself, you can achieve anything. He is our very own little Champ.
My name is Poppy. I’m 11 years old. I was diagnosed with nystagmus when I was 2 months old. I never allow my nystagmus to hold me back. I love dancing at the Lynsey Allen school of ballet and I also love horse riding.
I’m so nervous to be starting high school in September (lots of stairs!) but I know I’ll be fine when I get there.
Before lockdown I competed in my first dance competition and first ever knockout round and absolutely loved every minute, although it was difficult to pick up choreography with so many people (I tried). I’m so glad that our dance classes have started back as this is my escape, if only for a couple of hours.
I just want to let others know you can do anything and be anything you want. You are unstoppable.
Katrina did well at school, has worked hard throughout the pandemic and keeps herself fit with clubbercise.
She says: I have had congenital nystagmus all my life and I have never let it hold me back.
My name is Katrina, I am 22 years old, I attended mainstream school and college and have got a Level 2 Business and Tourism and a Level 2 and 3 IT qualifications.
For the past 2 and a half years I have worked on a number of contracts with Vision Express, for Carlisle City Council and in two different schools.
I also attend Clubbercise once a week in a local community centre and also Girl Power fitness classes. These have helped me keep normality in my life during the COVID pandemic.
I have had congenital nystagmus all my life and I have never let this hold me back, especially through school and college.
It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.
Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!
We will feature all your amazing stories here and on our Facebook page
