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.

The Nystagmus Network eye logo and the words Training the Professionals

Nystagmus Network launches webinar series for clinicians

Nystagmus Network  launches online CET webinars for eye-care professionals

The Nystagmus Network charity was founded in 1984 to support patients living with the condition. They currently have 500 members but estimate there are more than 64,000 patients in the UK living with the condition that they would love to support. This is why they want to expand their reach to engage with eye-care professionals to raise awareness of the charity and encourage referrals.

Daniel Williams, Trustee said “We are delighted to launch our new eyecare professional CET webinars and host some of the ground breaking speakers. We are a small charity wanting to grow our membership and engagement for the benefit of our beneficiaries”.

The Nystagmus Network is a registered charity in England and Wales, number 118450. They provide support and information to people living with all forms of nystagmus and the professionals who work with them.

Nystagmus is a complex, incurable eye condition characterised by involuntary movements of the eyes where they appear to wobble or flicker from side to side, up and down or round and round.

Nystagmus affects ability to focus, recognise faces and judge speed and depth.

The charity offers support and information to the 1 in 1,000 or more people affected by nystagmus, raises awareness through an annual Nystagmus Awareness Day on 20 June, whilst also investing in research into the condition to find a potential treatment.

Below is a list of the upcoming webinars you can book on. Each webinar will give delegates 1 CET point.

Nystagmus Network CET Webinars

The Nystagmus Network is delighted to host a series of webinars all about nystagmus for eyecare professionals. Each Webinar will provide 1 CET point.

Tuesday 26th May – 10:30

A Clinician’s Guide to Nystagmus

Nystagmus affects 0.24% of the population, yet it is a very poorly understood condition. Optometrists will regularly encounter patients with the condition in practice, especially in the low vision setting. Knowing how to modify routines appropriately, as well as how to classify and potentially refer patients for treatment, will help maintain high clinical standards.

This lecture will provide an optometrist’s up-to-date guide to nystagmus, covering diagnosis, classification, and how to modify a standard routine. Currently available treatments will be discussed.

Delivered by Dr Matt J Dunn who is a lecturer and optometrist at Cardiff University. His research focuses on clinical disorders of visual perception and oculomotor control. At the School of Optometry and Vision Sciences, he teaches clinical orthoptics. Matt is the author of the mobile ophthalmology reference text Dunn Vision Reference.

Wednesday 27th May

Diagnosing Nystagmus – how, why and when?

Jay will be talking about how Optometrists might approach patients with nystagmus and tips and tricks about what to look for, deciding how urgently to refer and what happens once they reach a specialist centre. No prior knowledge is expected!!

Delivered by Jay E Self BM FRCOphth PhD who is a Consultant Paediatric Eye Surgeon and Associate Professor at the university of Southampton. He runs a research group with an interest in nystagmus, albinism and childhood visual disorders and works closely with Helena Lee who is also a Consultant and Associate Professor in Southampton. Jay is a medical advisor to 4 support charities, a board member of 2 charities and ambassador for one. He has worked both as a researcher and clinician in the field of nystagmus for 15 years. He is a founder member of the Nystagmus UK Eye research group (NUKE).

Thursday 28th May – 10:30

Testing, Dispensing and Supporting Patients with Nystagmus

The holistic view of supporting a patient with nystagmus. A practical approach on how to test, dispense and support a patient with Nystagmus.

Delivered by Bhavin Shah, Behavioural Optometrist and Jayshree Vasani, Dispensing Optician. Bhavin is passionate about lifelong learning and technology to enable patients to optimise their vision. Jayshree is passionate about supporting patients with visual impairments and empowering the profession with her knowledge.

Contact

Sue Ricketts, Executive Information and Development Manager

Tel:             01427 718093

Email:         [email protected]

LinkedIn: https://uk.linkedin.com/in/sue-ricketts-38305b176

Enquiries

Tel:             01427 718093

Email:         [email protected]

Website:    https://nystagmusnetwork.org/