Nystagmus Network Open Day 2018

 

Even though my abseil for nystagmus research has had to be postponed (it’ll now be on 21st October), nystagmus has still been the big topic this month, because on Saturday I attended the annual Open Day held by the Nystagmus Network.

This was my second time going to this event, following my experience last year when I gave my first public talk. So this year was much more relaxed, because I didn’t have to do anything! And it was a wonderful day, so I thought I’d give an overview of how it went.

Traveling there was easy, because I came more prepared this time. Last year I found Birmingham New Street station a complete maze, so this time I downloaded the station plan from the National Rail website and stored the image on my phone. Having already checked the location of my hotel on Google Maps as well, I was able to find the correct exit from the station on the plan, which made it quick and easy for me when I arrived there. Sure, it is a very complicated looking station plan, reflecting the complex layout of the station. But because the railway lines are clearly visible, and the shop names are also indicated, I found it very easy to orientate myself and figure out where I was on it.

Last year I stayed in the Premier Inn just around the corner from the conference venue. But this year I decided to stay in the actual hotel where the Open Day was being held – the Macdonald Burlington Hotel. It’s just across the road from the station, and it’s a very nice place. It’s very smart and clean, with very professional and friendly staff. When I arrived, the receptionist offered to show me the way to my room, which I was very happy for him to do. He also offered to let the relevant people know that I would need a bit of extra help in the event of an emergency evacuation (there was also a sign in the room that you could hang outside your door for this purpose as well). And the staff at breakfast were also very kind in helping me to get what I wanted. So I felt very well cared for.

The bedroom itself was very nice, with lots of facilities including a TV, a safe, a trouser press, an iron and ironing board, a mini fridge and a thick hardback book about things to see and do in Birmingham, among other stuff. Some of the literature was in very small print, but I wasn’t worried about asking for anything larger. I could magnify it if I needed to, and I know I could have asked reception for anything I needed to know or get, so I was fine. I was only stopping over for the night anyway. And I had a very comfortable sleep, ready for the event the next day.

Hotel room with a double-bed next to a wardrobe with mirrored doors. In the reflection on the doors you can see the entrance to the en-suite bathroom on the other side of the room.

Small chandelier on the hotel room ceiling, with 4 lights held up on snaking glass poles coming out from the centre.

Desk in my hotel rom, with a gold coloured reading lamp, a welcome letter, a hardback book called This Is Birmingham, a leaflet about the hotel, a room service dining menu, and a booklet about their Christmas events. A large mirror is on the wall above the desk.

so let’s get on to the Open Day itself, and it was a great event. The agenda was absolutely packed with a variety of speakers addressing a myriad of topics, split into mainly 15 minute presentations, with the big keynote speakers getting 30 minutes. And everything stuck to time, incredibly. If anything overran or if there were any technical problems, I never noticed, and it all finished on time. So I was very impressed with how smoothly it went, as it’s no mean feat to organise an event this size. Sue Ricketts and her team deserve a lot of credit for that.

The highlight for me was our star guest speaker, the world renowned photographer David Katz, creator of Through My Lenses. David has nystagmus and is legally blind, but he never told anybody to begin with. He only revealed it after he’d spent years in his career building up an impressive portfolio that includes photos of prime ministers, presidents, royalty, celebrities and sports stars. Recently he took lots of stunning pictures at the Winter Paralympics.

Last year we were very privileged to see the world premiere of his inspirational film at the Open Day, and now this year we got to hear from him in person. His speech about his life was really interesting and uplifting, leaving us with the very clear message that we can all pursue our dreams, even if others say no, because there is no such word as “can’t”. He’s certainly proved that with his own incredible achievements. I also got to chat to him at the end of the day, and he’s a really friendly guy. So I hope we get to see him again at future events.

There was also an excellent speech by Marsha De Cordova MP, the Shadow Minister For Disabled People. She has nystagmus and is severely visually impaired, and gave a wonderful insight into what it was like for her growing up, and her experience of working in Parliament as a disabled person. She also stuck around to talk to people during the day, so she gave up a lot of her valuable time for us. I didn’t get a chance to say hello myself, but I know there were many who did and appreciated the opportunity.

Other items on the main agenda included:

  • Research updates from Moorfields, Southampton, Cardiff and Sheffield. There’s a lot of very interesting work going on, and the money I’m raising from my abseil is funding research at Moorfields with their partners at University College London.
  • Updates by the Nystagmus Network about raising awareness, fundraising, research and education resources, plus their Annual General Meeting.
  • A talk by rugby champion Wil Maudsley, another person showing that nystagmus doesn’t stop you from achieving great things.
  • A presentation about assistive technology from the RNIB and Orcam.
  • A talk by Guide Dogs about their habilitation services for children, to help them develop their independence and mobility skills as they grow and develop. This isn’t about training them to use a guide dog (it may lead to it, but doesn’t have to), this is just about helping children to grow up to leave as independent a life as possible.
  • A brief introduction to the Albinism Fellowship, as many people with albinism also have nystagmus.

The presentations all moved along at a very good pace and were all very easy to listen to. There were of course a few breaks along the way for people to relax and mingle. And even during the talks there were a few occasions where we were asked to discuss things on our tables and write our responses down on pieces of paper we had been given (e.g. our ideas for fundraising, suggestions for research projects,  and things that we can do despite – or because of – having nystagmus). So that gave us additional opportunities to chat and get to know people, which helped to keep everyone focused and interested.

We had also had the slides and a couple of video files sent to us beforehand via Dropbox, so we could still follow along even if we couldn’t see the big screen. Plus it gives us the ability to review things later and remind ourselves what was covered. So that was a great way of making things accessible for us, I’m glad they did that.

There were also activities to keep the children occupied, and workshops on education support and disability benefits, along with a research hub where people could talk to the researchers more closely.

There was also an exhibition for people to explore, with the RNIB, Guide Dogs, Albinism Fellowship and more. I didn’t get time to see much of it, as I was focused on the talks most of the day. But I did have a lovely chat with the guys from Aspire Consultancy, who are specialists in assistive technology for blind and visually impaired people, so do check them out if you need any help with that kind of thing. There was also a raffle (sadly I didn’t win anything!) and some Nystagmus Network branded merchandise (I got t-shirts for my friend Claire and I to wear for the abseil, and a couple of wristbands as well).

And throughout the whole day I got to meet a lot of lovely people – a big hello to any of you who happen to read this! There were a few familiar faces from last year, which was great, but most were people that I’d never met before, so it was really nice to make some new acquaintances.

In amongst all of them, I met a couple of my fellow abseilers for the first time, who are doing their rescheduled event a week before mine. So I hope it goes well for them, it’ll be interesting to hear how they get on. And congratulations to a few others who have already done their abseil. It’s a shame that we all had do it on different days in the end, but that’s the British weather for you. I’ll be with my good friends Claire and James for mine, so we can all support each other, which I’m very glad about.

So it was a long day, but a very worthwhile one. I really enjoyed the presentations and the various opportunities to interact with people, and I’m pleased the day went along without any hitches. Initial reactions I’ve seen on social media have also been very positive too. So thank you to everyone at the Nystagmus Network for a great event, and I look forward to the next one!

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