Tag: nystagmus

Could you do something extraordinary for nystagmus?

In 2018 we’re looking for people who want to do something amazing. We’ve got lots of opportunities lined up and we’re ready to give you masses of support to follow your dream. So whether it’s a mountain trek to Kilimanjaro you fancy, a London to Paris bike ride or something a bit nearer to home, we’ve got the bucket list adventure for you.

If personal challenges are what floats your boat, try this.

Or if sky dives are more your thing, click here.

To talk to us about how we can achieve your personal goal together and fundraise for the charity at the same time, please contact us here.

Nystagmus Network launches new publication on nystagmus and driving

Whether or not people with nystagmus can drive is probably the most frequently asked question the charity receives. Because nystagmus is such a complex condition and affects everyone differently, there is no definitive answer. In our new publication, Nystagmus and Driving, we address all the issues, answer your questions and signpost to free and concessionary alternatives.

Making the most of education – Rory Cobb

The Nystagmus Network was delighted to have Rory Cobb with us at Open Day 2017 to lead off the parents’ conference with an informative and inspiring presentation. Rory has a life time’s experience of working in the field of education and supporting children with low vision. Rory was ably assisted by his RNIB colleague, Sue Keil.

Here is their presentation: Rory Cobb presentation

 

 

World Film Première – Through my Lenses

The Nystagmus Network was proud to be granted permission to hold the first public screening anywhere in the world of a brand new short film about nystagmus at our 2017 Open Day in Birmingham on 30 September. Almost 200 members of the nystagmus community were present to watch the film. The film’s creator is a member of the Nystagmus Network.

Internationally acclaimed photographer David Katz shares his story in the film Through My Lenses which describes his journey from being diagnosed as blind at three months old to becoming one of the top sports photographers in the British national press by the time he was 20.

Through the film, David shows how he excelled in his chosen career of over 30 years, working as a highly respected and accomplished photographer for national and international newspapers and media, while keeping the fact that he is legally blind from almost everyone who knew him.

Remarkably, this career at the highest level of international media encompassed not only press photography, notably capturing shots of the British Royal Family including the Queen, and intimate images of celebrities such as Elton John and Amy Winehouse, but two long-term photographic documentaries, three political campaigns, and being chosen to be the personal photographer to a Prime Minister.

David created Through My Lenses in order to show what is possible with the right encouragement, persistence, dedication and commitment, and the spirit that anything is possible. His belief, based on his personal experience, is that there is no such word as ‘can’t’, and for anyone with a disability or impairment who is told that something is not possible, to know that it is.

“I was given my first camera when I was seven years old and have been in love with photography ever since,” he says. “I see things in a different way to other people. As a child I found it difficult to express what I saw through drawing or painting – a camera was the next best thing.”

Until now David hasn’t spoken about his condition as he didn’t want to be treated any differently to anyone else but feels the time has now come to share his story in the hope of helping others.

“There is some fantastic work being done out there, by organisations including the #valuable campaign, headed by Caroline Casey, which calls on businesses to recognise the value of one billion people with disability, and the Nystagmus Network. My hope is that I can add to that work and use my experience, knowledge and understanding to show children and their parents that they can achieve anything they want to. I hope my story proves that.” David Katz, September 2017

My bouncing eyes baby!

Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am very proud and also very lucky to have Scarlett in my life. Each day she is just a mass of love and giggles, always with a song to sing.

Scarlett, despite being pleased by the simple things in life, is medically very complex. Diagnosed at four and a half months with Optic Nerve Hypoplasia, Scarlett has no useful vision. When she was first born I do recall the frequent movement of her eyes. I also remember telling myself it is because she is curious, she is taking in the world, or whatever subject was trying to grab her attention,but this just didn’t quite cut it. I told myself that for many weeks, until one day yet another person highlighting the fact that Scarlett’s eyes never really fixed on anything and constantly danced around became too much to ignore. I took her to Bolton Eye Hospital for further investigation. We were told that her eyes moved around due to Nystagmus and that her sight was affected due to an under development in her optic nerve and that perhaps her sight may improve slightly, but I was relieved to find it would not deteriorate any further. Due to Scarlett’s age we did not know what sight she had, if any.

As she has grown older, Scarlett has given us no indication that she has any sight. She has additional needs which affect her social interaction and communication and her learning. Therefore, she has yet to confirm if she sees anything through her big blue bouncers. I suppose I have become accustomed now to the unknown: whether she can see, whether she can talk, whether she will ever function cognitively at a level appropriate for her age. Of course I get asked, by family, other children and strangers. I have also become accustomed to saying ‘I don’t know’.

Despite the complexity of my daughter and the gorgeous enigma that she is, I can say one thing for sure that she is truly happy. She has no awareness that she is any different and exists within a beautiful bubble all of her own.

Through being the parent of such a special little girl I have been on lots of adventures! My involvement and my full time job is running the online support and information network for charity VICTA Children.

Throughscarlettseyes.com was born out of my desire to want to help and seek support from families who were also raising visually impaired children. The network/community has been live now for three and a half years and continues to grow every day. Not only do I share my own personal experiences about Scarlett, but I offer an online platform to parents, carers, professionals, charities and organisations and people with a visual impairment to publish anything they wish! This has been a great experience for me and I have met many fantastic people along the way, people who have helped during the hard times, inspired when you feel like you are standing still, been a shoulder to cry on and I’ve heard some exceptional stories from which I have found such strength.

I have learnt that you might not always know what the future may hold, but that’s okay as no matter what plans you lay or expectations you have, you only have this one moment and you need to keep pushing to make it the best moment yet.

Want to become a trustee at the Nystagmus Network?

As we all go into 2017, are you looking for a new opportunity to give your energy, time, skills and talent to support the Nystagmus Network? We need people to join our team of volunteer Trustee to guide and direct the Nystagmus Network. Trustees have particular legal responsibilities under charity law. The skills, talent and experience we are particularly interested in are:-

  • Charity governance and legal expertise
  • Financial knowledge and accounting
  • Research commissioning and review expertise
  • Risk management and auditing
  • Fundraising – and energising others

As a minimum commitment, Trustees need to be able to attend meetings in London on a Saturday once a quarter, and to join other meetings of at least one of our sub-committees by phone perhaps every two months or so, and have the time to invest in some support work and planning activity, probably taking up a few more hours a month. We will meet reasonable travel expenses.

If you have time to give us, then please drop us an email at [email protected] with a brief summary of your skills and what you can bring to the charity to help us grow and develop.  We would like to start talking to prospective new trustees from the end of January.

If you have any immediate questions, then feel free to contact our Chairman, Richard Wilson, on 07964 887 104.

An inspiring story about passing exams!

We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom.

Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from Nystagmus Network Trustee and Education Advocate, Frances Lilly and Rory Cobb of the RNIB.

When Meg first approached the school and the QTVI, there seemed to be little advice or information available about adaptations and support for Lily to take the test. Could it be that some teachers do not expect children with a visual impairment to have aspirations to become academic high flyers?

What began as a two paragraph note from the QTVI about, among other things, blowing up the test papers on to A3 paper, ended as a four page document of detailed instructions on how different parts of the examination, including a multiple choice test on the computer, could be adapted and made accessible for Lily, in particular being printed on manageable A4 pages, giving her an equal opportunity to succeed alongside her fully sighted class mates.

“The opportunity to discuss the exam with Frances and Rory was invaluable. I could voice my concerns and they helped me to identify issues and offer suggestions/solutions to the school. It also gave me the determination to make sure that Lily had an equal chance when sitting the exam.” – Megan

Lily is a confident girl and was not sure that she would need the 25% additional time she was entitled to. This is not uncommon among VI students who do not want to appear to their friends to have any kind of special need. Like many other parents, however, Meg managed to convince Lily that the time could be very useful to her and could be used to check her answers and make sure she had not missed out any questions.

On the day of the test Lily triumphed. There was a slight hitch with the computer screen and Lily admits that she may have had to guess the answers to a couple of the multiple choice questions, but she passed. This ambitious young lady is now set on a path of high academic achievement thanks to her Mum, the RNIB and the Nystagmus Network.

If you or your child have a similar experience to Lily and Megan, or would like to share a story with the nystagmus community please get in touch with us!

Merry Christmas everyone!

Merry Christmas everyone!

It’s been a very busy year at the Nystagmus Network with lots taking place! Our Chairman Richard has a short Christmas message he would like to share with you all – please click on the image below or the link here to watch it.

Thank you for our support in 2016!

Finally, we would like to say a big thank you to everyone who has supported the charity in 2016. We have big plans for next year which we hope will make a massive impact on everyone in our community!

Have a great day and a very Merry Christmas from everyone at the Nystagmus Network!

Steve McKay announcement

It is with great sadness that we announce the sudden and unexpected death of Trustee Steve McKay from Newton Abbot in Devon.  Steve suffered a tragic road accident on Thursday 1 December which rendered him unconscious and he never recovered, passing away on Sunday 4 December.  Steve has been a highly-valued Trustee with the Nystagmus Network since 2009 and was responsible for our public relations and social media engagement.

He has made a huge contribution to the charity with his commitment and dedication and his seemingly boundless enthusiasm. At many of our Open Days Steve would astound everyone with his stories of daring escapades in the west country, including driving tractors and having a good go at a range of sports. He was a role model in never letting nystagmus hold him back.  Most importantly for the nystagmus community, it was Steve who came up with the notion of “Wobbly Wednesday” and who saw the potential of an annual awareness day for nystagmus that mixed serious messaging with a strong element of fun and celebration.  He recently shared a video blog with everyone about his love of photography – another of his many talents.

The Trustees and staff of the Nystagmus Network and everyone in the wider nystagmus community will miss Steve very much and our thoughts are with his family at this time.  His inspiration and zest for life and his determination not to let his visual impairment get in his way will live on, especially as Wobbly Wednesday continues to grow year-on-year. Below is a short tribute video to Steve.

Steve’s funeral will be held on Wednesday 21st December at 11.15 at All Saints Church, Highweek, Newton Abbot, followed by refreshments at the Highweek Inn. Family flowers only with donations going to the Nystagmus Network, either by sending a cheque payable to “The Nystagmus Network” to Zealleys, Funeral Directors of 17 Devon Square, Newton Abbot, Devon. TQ12 2HR, or direct via our Just Giving page here.