A brand new website signposting all the organisations available to help parents supporting a child with impaired vision launches today.
Nystagmus Network is proud that our Education resource HUB features as a valuable source of information on education matters.
Visit the portal here.
This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.
Delilah and her family offered the perfect story for our Jeans for Nystagmus Genes Day campaign, helping us raise awareness of nystagmus as a genetic disorder.
Thank you, Delilah
You can read Delilah’s Jeans for Nystagmus Genes story, here.
This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.
Roger inspired us to write a brand new guide to nystagmus – for adults. He generously shared his own thoughts on the subject to start us off and members of our community chipped in with their own thoughts.
The result? A brand new guide to nystagmus, which will be published in the New Year.
Thank you, Roger
Read Roger’s description of nystagmus here.
This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.
Nadine decided she didn’t want her little daughter to grow up in a world where people didn’t know about nystagmus, so she wrote her book ‘Can I tell you about Nystagmus?’ which explains nystagmus so simply that even a child can understand it.
Thank you, Nadine
You can order your copy of Nadine’s book, here.
This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.
Mike is a professional benefits expert who also happens to have nystagmus. He is always ready with advice and guidance which he offers freely to Nystagmus Network members. He also writes our guide to nystagmus and benefits.
A regular at our annual Open Day, Mike lends his time, support and expertise to Nystagmus Network members every day of the year.
Thank you, Mike
Download the latest version of Mike’s guide: DLA, PIP and Nystagmus, here.
This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.
Patsy is one of our newest volunteers. It’s thanks to her that we were able to start up our virtual support group for people diagnosed with Acquired Nystagmus.
Living with AN herself, Patsy is well aware of the frustrations of getting a diagnosis and any advice or treatment for the condition. She is championing the cause of AN, asking the researchers all your most searching questions, supporting others and giving them a voice.
Thank you, Patsy
If you or someone you know would like to join our virtual Acquired Nystagmus support group, please contact us today.
Nadine Neckles wrote the book ‘Can I tell you about Nystagmus?’ so that her young daughter, who has nystagmus, could live in a world more nystagmus aware.
‘Can I tell you about nystagmus‘ is a useful book for both carers of, and people with nystagmus. The user-friendliness of the book aids understanding of nystagmus, gives useful tips and shines a positive light on living with the condition.
Order your copy of the book today from our online shop, here, for just £8.99
Thanks go to Mike Hughes, our volunteer benefits adviser and all round expert on everything to do with benefits and nystagmus. Mike has updated his booklet on DLA, PIP and Nystagmus, so if you missed Mike’s workshops at Open Day, make sure you download your free copy of the latest version of his materials.
Download your free copy of the updated materials here.
Over 200 people gathered together on Saturday 28 September at the spectacular Principality Stadium, Cardiff for the Nystagmus Network Open Day 2019.
To the strains of Sospan Fach, by Cerys Matthews, Chairman of the Nystagmus Network, Richard Wilson OBE took to the stage to welcome everyone.
Up next, Nystagmus Network Founder and Honorary President, Vivien Jones, introduced lead researchers from Cardiff, Leicester, London, Plymouth, Sheffield and Southampton.
Elsewhere in the stadium, the children were enjoying the first drama workshop of the day, courtesy of UCAN Productions.
Next to take to the stage was Daniel Williams, Founder of Visualise Training and Consultancy and our keynote speaker for the day. Daniel shared his own sight loss story and reinforced the message that, with the right support in place, children and young people with impaired vision can achieve their goals.
There was a strong emphasis on education and, in particular, SEN support for children with nystagmus today in Cardiff.
Next to the stage were Nystagmus Network trustees and volunteer education advocates, Frances Lilley and Claire Brinn.
Following close on their heels was Michael Charles from Sinclairs Law, Cardiff. Mike and his colleague, Kevin, were there to provide information and advice for those families whose children attend schools in Wales, where SEN legislation is slightly different from that which applies to English schools.
Later, parents and carers had the opportunity to attend surgeries, drop ins and Q+A sessions with our legal experts.
Gwyn McCormack is the Founder of Positive Eye, an award winning teacher training provider, working to support children with special educational needs and impaired vision.
Gwyn introduced us to her character, Marvin and showed parents how to support their children’s learning and development using simple, everyday objects and tasks.
Elsewhere, Hannah-Elisabeth Ricketts ran a workshop on nystagmus in the workplace.
At lunch time Dr Gareth Rees from DVLA answered delegates’ questions about nystagmus and driving.
Researchers and clinicians were inundated with visitors to the Research HUB.
Our visitors also enjoyed the exhibition, which included suppliers of assistive technology, VI charities, the colleges and a beautiful selection of paintings by Neill Mison the ‘visually impaired artist’ who was there to chat with families about his art.
Parents were networking and getting down to their most burning questions in our Parents’ Forum with mother and daughter team, Jules and Hannah.
Meanwhile, Sara was busy in the Nystagmus Network charity shop selling T-shirts, mascots, raffle tickets and Christmas cards.
Nadine Neckles, author of this year’s fabulous new book “Can I tell you about Nystagmus?” joined us next. Nadine told us all about her book and her experiences of parenting a young child with nystagmus.
At tea time she signed copies of her book.
You can buy your copy, here.
We heard from our speakers in the afternoon about all the services available across the UK for people living with impaired vision and those supporting someone who has a vision impairment.
Representatives of all of these services were part of our exhibition.
Meanwhile, the children are enjoying a second drama workshop or taking part in a team-building exercise with VI rugby ace, Wil Maudsley. Wil was joined by surprise guest and total rugby fan, Adam Hills.
We may not be celebrating the 25th anniversary of our friendship quite yet, but, to the tune of “I’ll be there for you” by the Rembrandts we welcomed to the lectern two of the Nystagmus Network’s very best friends, Joanne Green, Head of Events and Fundraising at Moorfields Eye Charity and Rubina Ahmed, Head of Research at Fight for Sight.
Jo celebrated the amazing achievements of our abseilers and eye to eye walkers who have together raised very nearly £20,000 towards nystagmus research at Moorfields Eye Hospital and University College, London.
Rubina told delegates about our joint funding, to the tune of £250,000 over the next 3 years, of a brand new post-doctoral research project in nystagmus and other joint investment projects to come.
Young Oliver Mitchell welcomed us back into the Millennium Lounge with his rendition of “Danny Boy” in a respectful nod to our charity patron, Sir James Galway. Well done, Oliver!
And finally, we welcomed to the stage singer/songwriter, Ben Haynes. Ben knows only too well what it’s like growing up with nystagmus and albinism, but it hasn’t stopped him from pursuing a career in music. He generously shared his story and some of his music. You can hear Ben’s latest single, here.
Thank you to everyone who made the Nystagmus Network Open Day 2019 such a success and thank you to each and everyone who said yes to Cardiff.
We’ll be doing it all again next year on Saturday 3 October. The location and venue are still to be decided but you can put the date in your diary NOW!
Today’s guest post comes from Ella, author of the blog, Life of Ella. Ella is a First Class Honours graduate and a civil servant. She also happens to have nystagmus.
Some people with nystagmus might think that university is not for them, but Ella is here to share her experiences of support and success.
I recently graduated (class of 2018) from Nottingham Trent University with a first-class honours in Health & Social Care. I have a mild form of Cerebral Palsy and I’m visually impaired (I have Nystagmus and Astigmatism).
Before
I went through the same process as everyone else as applying for a place at university – writing my personal statement and submitting my UCAS application, deciding on my potential choices and working for the grades I needed.
When it came to choosing my five choices, (in the end I had four) I had to first decide the furthest away I wanted to look from home, and how easy it was to travel there and back home on my own. Reasons for this being I can’t legally drive so I rely a lot on public transport (mainly trains) to get me from A to B.
My four choices in the end were:
It was actually quite difficult to choose my first and insurance choices – for a long time, my top three choices were all being re-ordered, all for different reasons…the course, location, the campus, even the lecturers at the open day. Eventually, I settled on the list above, and I am so happy I went with NTU as my first choice, but more on that later.
After having my place confirmed at NTU I was then able to apply for my tuition and maintenance loans from Student Finance England (SFE), and apply for the Disabled Students’ Allowance (DSA) alongside … let me tell you, this was not a smooth ride, and I encountered my first major hiccup.
I was told about the DSA when I looked around DMU for the first time, with my parents. We visited the Student Support department to see what support they had to offer, and I briefly explained my situation and my needs. I never knew it existed until that moment, so I looked into applying for it at the earliest opportunity.
Take a look at this post by Chloe which explains the DSA in more detail and type of support you can get from it. I will also try and cover the help I got too.
After filling out the form for both SFE and DSA, they were both accepted. I was invited to arrange a Needs Assesment to determine what support I would need to help with my studies.
The assessment was pretty informal, a long chat so the assessor could find out more about my conditions (using non-medical jargon!) and chatting more about what could help with my studies.
The following recommendations were put into the final report and put forward to help me with my studies:
As well as these, I was given an ergonomic chair (to help with my posture and my pain if sat down for long periods – normal office chairs are super uncomfortable. The chair was made-to-measure)footrest, a laptop stand, and an external monitor.
We initially thought the laptop I had at the time would be suitable to run all this new software on – but when the suppliers came to fit it all, they ran into a problem. My laptop wasn’t powerful enough to run some of the software I needed. Luckily, DSA meant that they offered laptops to those who needed them. The catch – they had just updated the rules, meaning everyone now had to pay £200 if you wanted a laptop from them. That aside, I had everything I needed to help me when studying.
I was able to keep everything I was given, so my chair and footrest now live at work.
Next, I was able to apply for my student accommodation. My parents spoke at length with Student Support and Accommodations services at NTU to assess my options. I was always going to stay on campus, as that way I was able to access everything I needed, have my own space and the staff were able to help if I needed it. I Was able to go back and visit the accommodation a few times and I even got to pick my specific room.
Months went by and results day had passed. I kept checking my SFE online account to see that everything was in order. However, my tuition and maintenance loan application still said: “Awaiting confirmation” or something to that effect. Long story short, when I finally got to speak to a senior member of staff, it turns out my DSA application had somehow overwritten my other application. The whole process was a very stressful and inaccessible one, meaning I was considering dropping out of university before I had even got there, but they managed to sort it all out in the end.
I was able to move into my halls of residence a few days before others. This gave me a chance to settle in and get used to my surroundings before it was full of my flatmates.
Freshers Week wasn’t the nicest experience. I don’t drink and haven’t really been around many people who have drunk a lot. The nights were very loud and I felt very anxious. I mainly just hibernated in my room watching Netflix or YouTube, trying to drown out the loud music. I know that isn’t what you’re supposed to do but it just wasn’t my thing, but that is what Freshers is geared towards.
Throughout my time at university, I had an Access Statement which detailed my disabilities and what help I needed. This was given to my personal tutor(s) and lectures to help them understand what I needed and be aware of my situation. The statement also allowed me to gain deadline extensions (if I needed them) on assignments.
I was mostly able to access the lecture and seminar PowerPoint slides to read beforehand on my iPad and laptop and during the lecture.
If I was meeting new tutors, I took it upon myself to introduce myself to them and make them aware of my situation, regardless of them seeing my access statement. Most were extremely helpful and made my experience more positive.
My DSA allowed me to also have a non-medical support mentor. She would help me with planning my assignments and helping me with accessing materials and the best way to organise my work and proofreading. I found this extremely useful and would definitely recommend it.
During my three years at NTU, I stayed in halls of residence. This was for my own safety and ease of access. Student houses are often old and inaccessible, so that wasn’t an option for me. My friend and I decided we would stay in halls of residence together, we were able to stay in the same flat and still be on campus. I enjoyed living on campus throughout my time at university.
So…you might be wondering, what am I doing now?
I have a job working as an Administrative Assistant for a Civil Service department in Leeds. I have been in employment since November 2018. At the moment I am working part-time, as I was unsure of how I would cope with full-time work.
Reed in Partnership: Better Working Futures programme helped me in gaining employment. They not only helped me find a job but helped me massively with interview techniques and gaining confidence.
I really hope this post has been useful. If you are at university or in employment with a disability, what advice would you give to others?
Ella x
You can follow Ella’s blog, Life of Ella, here.
