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.

Our £17,000 investment in research

Nystagmus Network trustees have donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal.

The money will be used to purchase a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and 4x Cervical Range-of-Motion instruments (CROM) to measure head postures.

Patients with Nystagmus typically move their heads to access the best angle for their sight
and measuring this activity will provide further data to study this condition.

The new equipment will be used in both clinical and research settings and enable the Southampton team to access further research funding.

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.”

Trustees were able to make this investment thanks to the generosity of the Nystagmus Network’s supporters and fundraisers, notably Southampton-born Mike Larcombe who, in 2021, completed his Wiggly Walk 2, a cycle ride around Tasmania, and raised a further £1,000 in sponsorship. Thank you, Mike.

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