nystagmus network – Page 11 – Nystagmus Network

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

#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

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

Parent Power April

The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend a further session in our series of Parent Power webinars.

Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

The one day webinars (10am to 2.45pm) are FREE to attend.

The next workshop takes place on Friday 29 April

Book your FREE place here

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

Our Landmark weekend

This Friday to Monday Sue and members of the Nystagmus Network acquired nystagmus forum are spending time together in a beautiful, historic building, courtesy of the Landmark Trust. This is the first time everyone has met in person since they began getting to know each other online in March 2020. We look forward to getting better acquainted in relaxed and elegant surroundings.

Each year the Landmark Trust offers a limited number of stays in their historic properties to small charities. The scheme is called 50 for free.

The Nystagmus Network set up monthly online forums for parents, adults who have congenital nystagmus and adults living with acquired nystagmus at the beginning of the pandemic. The forums have been very popular and continue to flourish with some lasting friendships made along the way. We like to think of them as friendly, informative and a little haven away from worries about the outside world.

If you would like to join one of our online get togethers, please contact us by email at [email protected].

Tips for giving safely to charity

These are some top tips by the Fundraising Regulator to help you give to charity with confidence.

Before giving, check the charity’s name and registration number.

Check whether a charity is committed to good fundraising practice by looking out for the Fundraising Badge .

Be cautious about people collecting for general charitable causes.

Look for the charity’s name, registered charity number and a telephone number on fundraising materials.

When donating online, exercise the same caution as with any other internet transaction.

Donate through a charity’s own website or through well-established fundraising platforms.

Read the full charity giving safety tips on the Fundraising Regulator website here

An Illustration of a vwery colourful friendly monster. He is green. He wears pink polka dot pyjamas and fluffy red slippers.

Kevin the Monster comes to life

Did you know that a very special group of young people with nystagmus have helped children’s author, Tim Pearce create a character for his brand new book, Secret Agent Striker Strikes Back?

Tim was kind enough to run a children’s story writing workshop for us last year. Tim and the children created a story and a brand new character together. That colourful character was Kevin the Monster. Here’s how it happened, by Tim:

“In May 2021, I had the pleasure of sitting down with an amazing charity called Nystagmus Network for a ‘meet the author’ event.

The love and positivity the children displayed throughout the story showed that we should treat everyone the same, regardless of differences. I am proud to have had the opportunity to have written this story with them and would like to say a massive thank you to Ameerah, Oscar, Hannah, Josh and Abbie, along with the other children who contributed to the story.” – Tim Pearce

Kevin has been brought to life from the children’s imaginations by Tim’s regular illustrator, Jodie Dowie.

Here’s what we think of Kevin.

“Very colourful, fun rainbow horns. It’s great to see our ideas put together.“ – Ameerah

“Please thank Jodie for this fantastic illustration! The colours are so vibrant and eye catching and I love the cave with all the little details. He looks actually very friendly and approachable in his eyes despite his giant size and appearance. Perfect!” – Karen Chu, Trustee

“Oh, my goodness the slippers!!! Kevin is truly amazing. The children will LOVE him!” Sue, Nystagmus Network

The book costs £7.99, includes the above image of Kevin the monster and an acknowledgement of the children from Tim and is in nystagmus friendly large print.

Tag: nystagmus network