Walk for Wiggly Eyes – Nystagmus Network

Jay Self and Mike Larcombe at University Hospital Southampton. Mike wears a Nystagmus Network T-shirt and his Te Araroa medal.

Nystagmus Network invests £17,000 in research

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.”

Mike Larcombe with Jay, Helena, Harsh and Sue at University Hospital Southampton.

Meet me in Southampton

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.

A graphic of Mike dressed as the wiggly eyed warrior.

Wiggly Walk 2

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.

New to Mike’s story? Catch up on the all the highlights here

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”.

Find out more about Wiggly Walk 2 here

Night in with the Nystagmus Network

Virtual Open Day 2020, on Saturday 3 October, will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests.

This is a fabulous opportunity to meet, chat and network with nystagmus experts, guest speakers and presenters, supporters and members of the Nystagmus Network whilst enjoying a relaxed meal.

Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.

Members registering for this event will receive

a set menu to cook at home, purchase as a ready meal or order in
a Nystagmus Network cocktail recipe (alcohol free version included)
entry to the Nystagmus Network virtual treasure hunt
a zoom link with joining instructions

Not a member, but like to enjoy the Night in with the Nystagmus Network and lots of other member benefits? Please join us today! Annual subscription is £25. Subscriptions help keep the charity going and enable us to continue to invest in nystagmus research.

Become a member of the Nystagmus Network here

Night in with the Nystagmus Network

The Nystagmus Network virtual Open Day takes place on 3 October, with presentations, workshops, forums and fun for everyone.

The day, full of support and information and everything nystagmus, draws to a close in the evening with the spectacular Night in with the Nystagmus Network, a virtual supper party with an amazing guest speaker.

Night in guests (members of the Nystagmus Network and invited VIPs) will receive a set menu to prepare at home, purchase as a ready meal or order in, the recipe of the Nystagmus Network Cocktail (with an alcohol free version) and your entry form to the Nystagmus Network virtual Treasure Hunt. From 7.30pm onwards you will enjoy the company of your fellow dinners and some special announcements along the way. Plus you will be entertained and inspired by your very special guest speaker, the fabulous Mike Larcombe.

Booking is open NOW.

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

Mike’s a Nystagmus Super Hero

In case you haven’t heard yet, Southampton born, Mike Larcombe, who has CN, set off on his Walk for Wiggly Eyes on 16 December.

Mike is walking the entire length of both islands of New Zealand to raise awareness of nystagmus and funding for nystagmus research.

The Nystagmus Network is one of Mike’s 3 chosen beneficiary charities. The others are Gift of Sight in Southampton and Blind and Low Vision NZ.

The ‘wiggly walk’ is going to take around 3.5 months in all. It’s an incredible undertaking.

Please watch his progress and send Mike your support along the way, if you can, via Facebook or Instagram. The views are amazing!

To donate to Mike’s fundraising page, please click here.

THANK YOU

Trekking through Middle Earth for nystagmus research

Follow Mike’s wiggly progress on his Facebook page, here and donate to his Nystagmus Network fundraising page, here.

A sight-impaired young Englishman, Mike Larcombe, is preparing to trek across New Zealand to raise money for a complex eye condition that blurs his vision.

Mike has nystagmus, which he refers to as “wiggly eyes” and so does his young nephew.

Born in Southampton, UK, Mike has lived more recently in Australia and spent holidays in New Zealand. He says:

“I have a deep respect for New Zealand, having spent several months there on a working holiday previously. I relish the chance to do something positive to help others with nystagmus. ”

Mike will set off from Bluff at the tip of the South Island on 16 December to hike along the Te Araroa or Long Pathway trail, all the way up to Cape Reinga at the top of the North Island.

He expects to be walking for 4.5-6 months, wearing through about 6 pairs of shoes. He’ll be camping and staying in huts and hostels along the trail, paying his respects to Maori culture, while raising funds for the nystagmus community.

The funds raised will go to nystagmus charities in New Zealand and Britain for research and support – the Blind & Low Vision NZ, Nystagmus Network and Gift of Sight. All 3 charities are working towards a better understanding of the condition and, ultimately, to find a cure.

Mike says he wants to demonstrate to other people with nystagmus, including his 2-year-old nephew, Archie in Britain that they can still live rich, full lives.

Despite his much-restricted vision, Mike graduated as an electronics engineer. He has been working in Brisbane, but has resigned for the trek.

“While I’m unable to drive a car because I can’t see far enough to qualify for a licence, I can work closeup on complex electronics equipment,” said Mike.

“I’m confident I’ll be able to wind my way safely through the land many people around the globe now know as Middle Earth. If I do stray from the path, I’m sure a friendly Hobbit or local Kiwi will guide me in the right direction.”

“When you have restricted vision, other senses come into play – smell, touch and sound in particular.”

“I image myself absorbing those other stimuli as I lightly tread the earth through the islands of New Zealand – a very special place with an incredibly rich culture.”

You can follow Mike’s wiggly progress on his Facebook page, here and donate to his Nystagmus Network fundraising page, here.

Mike’s wiggly walk – video update

Mike has nystagmus and so does his young nephew, Archie.

Later this year and well into 2020, Mike will be walking the length of New Zealand to help find a cure for nystagmus.

The route he’s following is the Te Araroa pathway, taking in both the north and south islands, on foot and sometimes in a kayak, to raise funding for two charities close to his heart: Nystagmus Network and Gift of Sight.

Mike will set off on his walk in December this year. He thinks it will take him around 131 days to complete. We are in awe of his dedication and will be with him in spirit every step of the way. Meanwhile, Mike will be keeping us updated with his video blogs. You can view his first video, by clicking here.

Read about Mike’s inspiration on his Walk for Wiggly Eyes website.

Mike’s wiggly walk

On Nystagmus Awareness Day we are proud and delighted to announce that our newest supporter, Mike plans to walk the length of New Zealand to help find a cure for nystagmus.

Mike will set off on his walk in December this year. He thinks it will take him around 131 days to complete. We are in awe of his dedication and will be with him in spirit every step of the way.

Read about Mike’s inspiration and follow his progress on his Walk for Wiggly Eyes website.