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.
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.
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].
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.
In celebration of World Book Day 2022, we are pleased to announce the publication of the Raindrops story book.
This digital publication includes the winning stories, inspired by raindrops, written by Annabelle, Eliana, Harry and Daria. Read what our esteemed judges thought of their Nystagmus Awareness Day 2021 competition entries and the drawings submitted by Nerea, Myles, Alishba and Luca.
With thanks to all the children who took part in the competition, to Josh for the inspiration, to our judges: Tim Pearce, Katherine Mengardon and Nadine Neckles, to children’s authors, Tim Pearce, Helen Rutter and Claire Alexander for their inspirational writing workshops, to our generous sponsors for the prizes and to Nick for designing the book for us.
The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend our periodic 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.
Dates for our next Parent Power workshop will be announced soon.
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.
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.
Late last year the Nystagmus Network applied on behalf of members of our AN and Oscillopsia forum, thinking this would be a lovely chance for them to meet up in person and share quality time in a relaxed setting. Our bid was successful and we have been offered a lovely long weekend stay this March.
Eight people drawn from the forum will travel to their destination and enjoy getting to know each other in person in elegant surroundings.
The Nystagmus Network set up monthly online forums for parents, adults who have congenital nystagmus and adults living with acquired nystagmus in March 2020. 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 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].
FREE CPD webinars with the Nystagmus Network for Optometrists and Dispensing Opticians
A brand new series of three Nystagmus Network webinars are now available online on demand for high street optical staff. Attendance at each webinar delivers 1 CPD (Continued Professional Development) point, allowing practitioners to maintain their professional standards.
Investigating and managing nystagmus in the orthoptic clinic is by Gemma Arblaster, Orthoptist at Sheffield Teaching Hospitals NHS Foundation Trust and Lecturer in Orthoptics at the University of Sheffield. Gemma also serves as a research adviser to the Nystagmus Network.
Jayshree Vasani, Dispensing and Contact Lens Optician, ABDO practical examiner and CET Facilitator, presents Solutions for patients with nystagmus, exploring dispensing spectacles and contact lenses for patients with infantile and acquired nystagmus.
Looking at nystagmus from the patient perspective, the charity’s Information and Development Manager, Sue Ricketts, entitled her webinar 1 in 1,000 things you never knew about nystagmus, bringing the patient voice to the fore.
The webinars will remain available to eye care practitioners FREE OF CHARGE until 12 May 2022.
Sue Ricketts said: “It is the Nystagmus Network’s ambition to bring eye care practitioners and their practices and the nystagmus community closer together, to build stronger relationships, based on knowledge, experience and trust. We are delighted to have the opportunity to provide professional training to help us work towards this goal, thanks to the support the charity enjoys from clinicians and researchers.”
The Nystagmus Network has been investing in research since the 1990s.
Nystagmus academics, clinicians and researchers in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton continue to focus on causes, effects, treatments and quality of life.
In the last 30 years we’ve seen huge advances in the sophistication of diagnostic techniques, with more widespread use of electronic testing providing ever more accurate clues to the causes and likely impact of nystagmus.
Optical, medical and surgical treatments have also been developed to improve both the vision and the quality of life.
There has been much to celebrate.
But, despite some emerging signs of potential early interventions, sadly, prevention and cure still seem a long way off.
We need more research!
To kickstart more nystagmus research, we need two things: money and a good research question.
You can help us!
Tell us which aspect of life with nystagmus you think researchers should examine as a priority to achieve the greatest impact on people living with the condition by submitting your research question today. We will collate all your responses and put them to researchers in a bid to start some new nystagmus research.
Your research question should be:
Focused on a single aspect of life with nystagmus
Researchable using primary and/or secondary sources
Feasible to answer within a reasonable timeframe
Specific enough to answer thoroughly
Complex enough to attract academic interest
Relevant to the lives of people living with nystagmus
Please use the form below to submit your nystagmus research question.
The deadline for submissions is 31 March
Alternatively, you can make a donation to the Nystagmus Network research fund to help us continue to push the boundaries of scientific investigation.
A new study by a team of researchers at the University of Melbourne, published in January 2022, set out to assess the effect, if any, of nystagmus on the perception of movement. Scientists also sought to establish whether those effects changed when the null point was in play.
People with nystagmus were tested both using their null point and not using it. People without nystagmus were tested using both their central gaze and an off centre gaze. They were presented with movement both up and down and side to side.
Their conclusions?
The trial showed that incoherent motion perception (seeing the general direction of movement, such as when a flock of birds is in flight or a crowd of people walking in the street) was impaired in those participants who had congenital or infantile nystagmus, to the same degree in both the horizontal and vertical directions.
The null position was not found to provide significantly better motion perception, although there was a trend towards better horizontal perception at the null position than 15 degrees away from it.
The findings could help to understand better how people with nystagmus perform daily visual activities and assist in developing new clinical visual function assessment tools for nystagmus patients. Compared to static visual acuity, motion perception can be examined to assess the real-life visual function of nystagmus more thoroughly. Questions related to visual motion perception can also be added to quality of life surveys to assess more closely real-life related visual function in nystagmus.
