Tag: nystagmus

Jay Self

Does albinism protect against AMD?

We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism (OA, or OCA). Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If you or anyone you know fits the bill, please read on …

Jay and Helena are seeking to understand two questions which have baffled researchers for some time and they need your help:

1.       Why has Albinism and Age Related Macular Degeneration (AMD) never been seen in the same patient when AMD affects 1/3 of people over 75? Are people with Albinism protected from this condition?

2.       Why does the retina lose function late in older animals with Albinism, but apparently not in humans?

If anyone with Albinism, who is over the age of 60, would like to help Jay and Helena find answers to these important questions, please complete the form below. Please note that by completing the form you are giving us your permission to pass on your details on to the relevant research team.

Thank you.

The front cover of the BNystagmus Network guide to nystagmus and benefits.

A new guide to nystagmus and benefits

From our monthly virtual support networks to our free benefits advice, the Nystagmus Network is always here for you.

As we emerge from the pandemic, we’re all feeling the financial pressure of increasing fuel prices, the rise in the cost of living and, for some, job insecurity. So, we’ve put together a new guide to benefits.

Alongside our bespoke booklet on DLA, PIP and Nystagmus by volunteer Mike Hughes, a professional benefits adviser and member of the Greater Manchester Welfare Rights Advisers Group (GMWRAG), we now offer a Benefits Guide, providing information on a wider range of means-tested and non-means-tested benefits which may be available to someone living with nystagmus. The new guide was compiled by our staff team, under Mike’s professional guidance.

Download the new benefits guide here

The front cover of the Nystagmus Network annual report 2021.

We publish our Annual Report 2021

With two years of global pandemic behind us, the Nystagmus Network is still here, supporting the nystagmus community, thanks to the dedication of our valued supporters, fundraisers and members.

Thanks to you, in 2021 we
 

·       supported almost 600 people with enquiries, helping them to make sense of nystagmus

·        engaged with and provided information to over 13,000 people on social media

·        invested a further £17,320 in nystagmus research

Read the Annual Report 2021 here

Children in a classroom with their hands up to answer the teacher's question.

Reform for children and young people with SEND

As part of a SEND reform, which the UK government describes as ‘ambitious’, a green paper has been published as part of a consultation on a stronger national system for children with special educational needs and disabilities (SEND), boosting parent confidence.

Better support for children and young people with special educational needs and disabilities (SEND) is at the heart of a new national plan to level up opportunities, with a key focus on ending the postcode lottery that leaves too many with worse outcomes than their peers.

The Government’s SEND and alternative provision green paper, published on 29 March, sets out its vision for a single, national SEND and alternative provision (AP) system that will introduce new standards in the quality of support given to children across education, health and care.

The ambitious green paper is the result of the SEND Review, commissioned to improve an inconsistent, process-heavy and increasingly adversarial system that too often leaves parents facing difficulties and delays accessing the right support for their child.

The plans to reform the system will be open for a 13-week public consultation, giving families frustrated by the existing, complicated and bureaucratic system of support the opportunity to shape how a new system will work in the future – and give them confidence that their local school will meet their children’s needs so they can achieve their full potential.

More details on the gov.uk website here

a group of children in brightly coloured tops stand together in front of a blackboard with chalked words and numbers on it.

Curriculum Framework for Children and Young People with Vision Impairment (CFVI)

Defining specialist skills development and best practice support to promote equity, inclusion and personal agency.

Overview of the CFVI

The Curriculum Framework for Children and Young People with Vision Impairment (CFVI) has been developed to support children and young people with vision impairment access an appropriate and equitable education. 

The framework presents outcomes within 11 teaching areas:

  • Facilitating an Inclusive World
  • Sensory Development
  • Communication
  • Literacy
  • Habilitation: Orientation and Mobility
  • Habilitation: Independent Living Skills
  • Accessing information
  • Technology
  • Health: Social, Emotional, Mental and Physical Wellbeing
  • Social, Sports and Leisure
  • Preparing for Adulthood.

It provides a shared vocabulary to be used by children and young people, their families and professionals in the UK who work with them. A shared vocabulary supports both better communication and purpose.

Parents and carers

The CFVI can be used to enable parents and carers to understand the pathways of support for their child and the services who may be  involved in providing that support within a given nationwide context. 

This increased understanding of the areas of focus for a child’s learning, development and wider participation and the common language and shared vocabulary that the CFVI provides, should enable parents to feel more comfortable and confident when meeting professionals to discuss their child’s progress and participation in education and the wider world. 

Join RNIB for the Curriculum Framework for Children and Young People with Vision Impairment (CFVI) Live Q & A Session

This is an opportunity to address the CFVI project team directly with any questions you may have about the framework itself, it’s development or its use in practice.

Book your free place 

The Curriculum Framework for Children and Young People with Vision Impairment (CFVI) live Q and A is a free, online event taking place on Wednesday 4 May from 12 to 1.30pm. 

You can book your free place by registering on Zoom. 

Please submit any questions you would like to be considered by emailing [email protected]. The closing date for question submissions is Monday 2 May 2022. 

A speaker at a Nystagmus Network research event.

Grant funding available for nystagmus research

The Nystagmus Network / Fight for Sight joint call for a small grant award in nystagmus research, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments, is now live and open for applications.

Full details, as well as the guidance document for the applicant can be found on the Fight for Sight website.

The deadline for the call is 28 July 2022.

People sitting together at a table enjoying breakfast.

Our ‘wonderful’ Landmark Trust weekend

Members of the Nystagmus Network acquired nystagmus and oscillopsia forum recently enjoyed a weekend away courtesy of the Landmark Trust ’50 for free’ programme.

The group stayed at the splendid Georgian property, Elton House, in the centre of Bath, where we enjoyed all the comforts of modern living and all the attractions of the city right on our doorstep.

A member of our group spoke for all of us when she said: “Our recent weekend in Bath was a wonderful experience and a chance for us to meet each other in person for the first time. It enabled people to be themselves without judgements being made about missed steps or where we sat in a restaurant. The group was such a success, you wouldn’t know we had only just met!”

Another group member said: “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much to the Landmark Trust.”

The picture shows group members enjoying brunch together at a local deli

A flyer including details of Symposium2022

#Symposium2022

Researchers, clinicians and students working in the field of nystagmus research are invited to attend this free international event, hosted by the Nystagmus Network on Friday 24 June 2022.

Abstracts submissions

If you would like to deliver a 15 minute presentation on your work in nystagmus, please submit an abstract. We welcome topics leading to the advancement of our understanding of nystagmus, including (but not limited to) diagnostics, genetics, treatments and therapies, management and support.

300 words max
no later than 30 April email: s[email protected]

Successful applicants will be required to deliver a 15 minute presentation of their work, in person or online, and be prepared to answer questions. Presentations should be in PowerPoint.

Registration

Delegates are invited to attend in person or online. There is no registration fee, but please note that you are required to cover all your own expenses if attending in person. Please register below. Thank you

Please note that this event is strictly for researchers, academics, clinicians and students in the field of nystagmus research only – thank you.

Register here for Symposium2022

A postcard with pictures of people walking and the words Nystagmus Network walk 500 miles for nystagmus research.

Could you help us walk 500 miles?

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

  1. Decide on your route – you can build up your 10 miles with lots of shorter walks over several days
  2. Set up your Justgiving page for your sponsors here; we’ll help you promote it
  3. Download a sponsor form here for your offline donations
  4. Tell all your friends and family about your walk
  5. Tell the Nystagmus Network!
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.