2 knitted mascots.

Sue’s Two Point Six Challenge

Sunday 26 April 2020 was to have been the date of the London Marathon with runners raising £millions for UK charities.

The Nystagmus Network’s runner, Adam, is still training to run in the postponed race in October.

Meanwhile, the organisers have launched The Two Point Six Challenge to help save the UK’s charities by giving us an opportunity to raise some funding to keep us going. It’s also completely safe and a bit of diversion during lockdown.

The Nystagmus Network’s Sue is amongst those taking up the challenge.

The idea is that you set yourself a target based around the numbers 2, 6, 2.6 or 26.

Sue says: “I can’t run a marathon, but I can knit!
Nystagmus Network mascots usually wear woolly hats and scarves, but for my 2.6 challenge I’m going to knit 26 mascots wearing running kit by 26 May. Please sponsor me if you can and wish me luck!”

You can sponsor Sue here.

To pre-order your nystagmus 2.6 challenge mascot, please CLICK HERE.

People queue with trolleys in a supermarket car park

Your food shopping experience

How are you getting on with shopping for food?

What are your experiences of queues, social distancing, assistance available in store?

Have you managed to secure online delivery slots?

The Nystagmus Network continues to lobby alongside other bigger VI charities (please see this recent Daily Telegraph article) for the rights of people with nystagmus and other sight conditions to have priority treatment for both online and in store shopping, alongside other disabled people, and for there to be more understanding about the need to pick up packets and tins to read the labels if a fully sighted friend, family member or member of store staff is not available/allowed to assist.

We will also raise a question with Sight and Sound at our forthcoming webinars about the best aid to reading labels.

Please contact us with your thoughts and comments.

Thank you

Go hard and go straight home!

Make the most of your time outdoors (or inside!) with one of these fabulous fundraising challenges.

  1. choose your challenge
  2. sign yourself up
  3. set up your Justgiving page for sponsorship

Choose from:

Climb Everest – A 12 week challenge perfect for isolation. Complete a climb equivalent to Mount Everest (8,848m) either out and about on your daily exercise, climbing the stairs indoors, or a combination of the two!  

Inca Trail – A virtual challenge to tick off the bucket list.  A 25 mile run, walk or jog to be completed in as many efforts as you can manage.

Team Gotham – Not all Superheros wear capes … some have to fight crime in isolation too! This is a 5k challenge, perfect for families who want to complete it together, or anyone looking to stay fit during lockdown.

The Big Charity Run – The ultimate challenge: pick a 30, 60, 90 or 120 mile distance to complete over a single month.  You can run, walk or cycle so set yourself an ambitious target and stay motivated!

Location Specific Races – If you’re looking for something that’s as close to a road race as physically possible, there are a number of location specific races included so you can take part in a race on a specific date.

Choose your challenge here

Set up your Justgiving page here

30 years of nystagmus research – what a difference it has made

When my daughter was 6 weeks old a paediatrician at baby clinic told me she was blind. Just like that. No preamble. It was a devastating experience, a cruel message, bluntly delivered.

I went to see my GP, whom I knew well and trusted. She confirmed what I already suspected. My daughter wasn’t blind, but she did have something wrong with her eyes.

My doctor wrote the word nystagmus on a compliment slip and handed it to me. She couldn’t tell me any more. I had so many questions, but she had no answers for me. She made me an emergency appointment (another scary thing to hear at this point) with the ophthalmic hospital. It took two weeks to come through.

There followed a barrage of tests, each more alarming than the last, and at the end of it all we still had nothing but that ugly word, nystagmus.

I keep that compliment slip to this day as a reminder of how far we have all come. It’s what spurs me on to support other parents and raise awareness and understanding of this complex condition.

Since the early 1990s the Nystagmus Network has campaigned for and invested in nystagmus research whenever funding permitted. Thanks to the generosity of our supporters, there has been a substantial sum invested nearly every single year.

In the past 30 years clinicians have gained so much knowledge about this truly Cinderella condition: how to diagnose it, which of the many possible causes may be responsible for it and even how well a child will be able to see. They have also learned a lot about delivering worrying news to a parent.

Today researchers stand poised to unlock genetic secrets, manipulate enzymes and stop nystagmus in its tracks.

We have come this far together in just 30 years, a period which has seen the birth of the internet, the end of apartheid in S Africa, the fall of the Berlin Wall, the credit crunch, a decade of austerity, Brexit and, today, a global pandemic.

Who knows what is to come next for our brave new world? One thing is for sure. The Nystagmus Network will still be here, making your voice heard, working alongside the best brains in the country to find effective treatments and yes, eventually, a cure.

With your help, we can do this.

To donate now to the Nystagmus Network research fund, please click here. 

THANK YOU.

Nystagmus Aware logo

Does nystagmus or ocular albinism affect my immunity?

Lots of you are asking us this question and some of you have received notification letters from the government.

We asked for expert clinical advice and received the following statement:

“IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity.

“There are some syndromic forms of albinism that are associated with immunocompromise and these patients would already be aware of this and/or have been notified by the UK government that they are in the vulnerable group.”

Whether or not you have nystagmus, please remember to follow scrupulous hygiene practices, including thorough hand washing, whenever inserting, removing or cleaning your contact lenses as we understand that the coronavirus can enter the body through the eyes.

If you wear glasses or sunglasses, please wash these regularly using non abrasive soap – we find washing up liquid does the trick.

If you are registered sight impaired (SI) or severely sight impaired (SSI) you can ask to use priority shopping times and online supermarket delivery slots.

Keep asking us you questions. We will find the answers for you.

Say safe and well

Julia smiles at the camera.

Julia’s musical adventures

A guest post.

A couple of years ago, I wrote a piece about being a parent with nystagmus of a child without. That child is now old enough to tell me if an approaching bus is a three-and-a-four-and-a-one or a two-and-a-nine, and I consider myself to be winning at life. My second child appears to have decent vision, too. In that article I made mention of my life as an amateur musician. And it turns out there is much to say about being an amateur musician with nystagmus. Some background, then. I’ve got mild nystagmus, bad myopia and astigmatism resulting in vision that’s poorly corrected by glasses or contact lenses. I sing in choirs, play the flute very occasionally in orchestras and took up the violin as an adult.

As a member of a choir, my music-making has tended to take place in churches. For space and facilities, churches are great, for lighting, not so much. As the evenings darken, the torch on my smartphone comes into its own as I struggle to read my music. At least in that I am not alone. The young people are fine, but the, ahem, less young are with me on that, and I thank technological evolution for making my life easier. Rumour has it that music publishing has gone a little bit digital. I’ve yet to see it in use in the real world, but perhaps I’ll benefit one day much, though I am loath to say it, as I have with my electronic reader with its new-fangled enlarged text and lighting options. 

I have problems changing my focal length from page to conductor. The better you know your music, the less you have to look at it. It follows that the harder you work, the less your disability is a problem. Here, again, though, I join forces with my long sight/short sight colleagues.

But for someone with nystagmus, there are those times in choir when the conductor looks at you and says, “Would you have a go at that solo?” In an instant, your heart swells, the adrenalin kicks in, and you’re just about to agree, trying to put a humble spin on it, when the person next to you pipes up and you realise the conductor was looking at her, not you.  

If you have done a solo, the conductor will usually signal for you to take applause for it at the end of the piece. It’s a thrilling feeling when the noise swells in appreciation. But there have been times when, from my flute-playing seat at the back of the orchestra, I have wondered if the conductor was looking at me, dithered and failed to get up. Well, that’s ok. But there has been at least one occasion when the conductor was signalling the clarinet player directly behind me, and I stood up with her — I stole her applause and failed to get my own. 

One of the reasons I play the flute is because you hold it sideways and therefore can get as close to the music as you like. I usually have my music stand higher up and closer to me than “normal”. This works fine for me, but orchestra conductors don’t like it because it ruins the sight-lines and therefore interferes with communication between conductor and player. The classical music world is rife with jokes about conductors and their egos that would sit happily here, but I know a few conductors who will be reading this and I don’t want to ruin my chances of working with them again. I digress. I’ve been asked by a conductor to lower my music stand and felt the tears spring into my eyes, just like when I was at school, as I tried to explain, in front of the whole orchestra, that I couldn’t because then I wouldn’t be able to see the music. I wonder if I’ll ever grow out of that tear-springing feeling.

Another problem in orchestra rehearsals is when the conductor says that we’ll start playing from 15 bars before figure B. Challenge number one: find figure B. Eyes darting across the page — there’s A, there’s C, where on earth is B? Ah, got it (but I thought that was an eight). Challenge two: count back fifteen bars. That’s a rest bar with a number in it. Is it a 1 or is it a 4? (There’s no accounting for the vagaries of type-setting in music publishing.) Right, it’s a 4, count back another eleven bars. Ok, I’m there, I think. Right, so is everyone else. They’re waiting for me. Oh dear. (Thank goodness I’m not a professional, because time is money.) Or they’ve ploughed on regardless and I’m even more lost than I was before. 

The flute section being at the back of the orchestra means the conductor is quite a long way away, far enough for me not to be able to see facial expressions. This certainly has advantages, when those of unfriendly temperament (rare as they are) offer glowering looks at offending players and I carry on, oblivious to their displeasure. Again, winning at life. 

I took up the violin a few years ago, with the hope of one day joining the fiddle section of a bad orchestra. If I ever become good enough, I’ll have to work really hard between rehearsals to learn the music so that I’m not hampered by the music being too far away to see. I’ll have to work harder than my peers, which is annoying, since I am naturally lazy, but I might be a better musician for it.

The better you know your music, the more you look at the conductor. The conductor is there to drive the music, to shape it and to help the performers deliver their best for the audience. The conductor wants to know that the performers are watching; it helps them do their job. I watch the conductor when I can but, because of my null point, perhaps the conductor thinks that I’m looking into the audience at my parents, just off to the right. No conductor has ever mentioned that to me but I wonder if, consciously or unconsciously, any has thought me a worse musician because of it. 

As I have reflected on this topic, I have concluded that I need to work that little bit harder in certain areas than my colleagues in order to achieve the same result. The child of the ‘80s in me says, “never mind, it’s ok, I can manage.” I think this approach is fine in this instance, because what use is a singer who can’t sing the notes? Perhaps I’m seeking acknowledgement for the extra effort. The arts sector tends not to handle disability well, and while I’m grateful that society is more open to conversations in this area than formerly, there is clearly work to be done. 

Click here to read Julia’s story of nystagmus and motherhood

People chatting.

Nystagmus researchers need your help

Common misconceptions about nystagmus

A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond.

They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both people with nystagmus (and their parents/carers) but also the general public.

The study will take the form of an online questionnaire and seek to understand both the public’s assumptions and understanding of what nystagmus is, alongside what people with nystagmus feel is commonly misunderstood or misinterpreted.

Do you have any suggestions for things which the research teams could ask to help highlight common misconceptions or assumptions about nystagmus? If so, please complete the form below. Thank you.

Thank you to everyone for sharing your thoughts on common misconceptions about nystagmus. This study is now closed. We will report on progress as soon as we can.

Fight for Sight logo.

Fight for Sight survey on eye conditions and sight loss

Fight for Sight needs your help as part of a ground-breaking survey into the experience of living with sight loss or an eye condition. By taking part in the survey you will be helping Fight for Sight to put sight loss on the map and help increase the amount of money going into eye research.

You may not be aware but currently sight loss costs the UK economy over £28 billion each year. Yet only 1% of public grant funding for medical research is spent on eye research. That’s just £20 for each person living with sight loss.

Fight for Sight is determined to change this – but they need your support. Taking part could help them secure urgently needed funding for pioneering eye research projects.

Fight for Sight have asked Populus and Kaleidoscope Research to conduct the survey. We are independent research organisations and the information you share with us via this survey will be used for research purposes. The findings may be used as part of the evidence Fight for Sight present when seeking funding for eye research projects, in reports and as part of their publicity and campaigns work. Any findings published will be anonymised and not used in a manner which could identify you. We will respect your privacy at all times and your information will be kept securely.

To take part in the survey please click on the link below or paste it into your browser, it should take no more than 15 minutes to complete.

Take the survey online here.

If you would prefer to complete the survey by telephone, please contact Fight for Sight during office hours on 020 7264 3900 and they will arrange this for you.

If you have any queries or survey related issues please contact [email protected]

Are you going to LookFest 2020?

LookFest is an accessible family festival outdoors and under canvas for families where there are children and young people with impaired vision.
After the huge success of LookFest 19, they’re doing it all over again in July 2020.

Join them in the beautiful Herefordshire countryside for a fun-filled weekend with the #LookFamily

See the highlights of last year’s festival and find out what to expect in 2020, here:

LookFest 2020 preview

Reading an optician’s prescription

Although glasses cannot stop nystagmus they can correct refractive errors, such as long or short sight and astigmatism, to make the sight as clear as it can be.

Do you understand what all the numbers and words actually mean on your prescription? Specsavers have made a handy video explaining everything. Watch here to find out from Dr Nigel Best DOptom MCOptom FBCLA FAAO, a qualified Specsavers optometrist.

Watch the video here.