Month: June 2018

Aniridia Day – My Aniridia Sight

Happy Aniridia Day! Following the shining success of last year’s launch event, this year it’s back and there’s loads going on today.

For starters, there are hours of live webinars taking place all day, with talks and Q&A sessions by patients, parents, doctors and researchers from all over the world. And I’m involved in one of them, because myself and James Buller will be discussing living with aniridia. So do join us if you can!

But the other major part of the day is the Aniridia Sight campaign, where people post a photo of a scene, and then describe how they see the same scene from the same position – i.e. when they take the place of the camera, what can they see with their own eyes?

So in this post, I’m going to share my contribution to the Aniridia Sight campaign. And you can do the same, by sharing your Aniridia Sight photos and descriptions to the Aniridia Day Facebook group, or posting on social media with hashtag #AniridiaSight and tagging @AniridiaDay. I hope you all have a great day, and you find the following description about my sight interesting.

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Whose Liner Is It Anyway?

I’d love to go on a cruise one day, it’s one of those bucket list items for me. I know a few friends who have done it and enjoyed it, and I love the idea of relaxing in a massive floating hotel… well, they can be entire floating cities in effect… with all the entertainment on board, and visiting a variety of interesting places. One day it’ll happen I’m sure. 

But I got a nice taste for it on Saturday, and in particular learned about a lot of the history of it, with the Victoria & Albert Museum’s exhibition Ocean Liners – Speed & Style. This was the last weekend of the exhibition, so I just got around to seeing it before it closed. And I made a new friend in the process. So it was a lovely day, and I thought I’d tell you a bit about it.

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Peter Pan

This weekend I took my mother to see another theatre show – Peter Pan at the Regent’s Park Open Air Theatre. It’s another venue we’d never been to before, and we loved the idea of watching a show in the outdoors. And, as usual, we had chosen an accessible performance that included a touch tour and audio description from the wonderful folks at VocalEyes. I’m pleased to say we had a lovely time, and the weather also behaved itself, so I thought I’d tell you about it.

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May 2018 Favourites

May was a lovely month. The weather’s been gorgeous lately, for the most part, and with no major events going on it’s been quite a relaxing few weeks. But there are still various bits and pieces I’ve enjoyed, and want to mention in this latest post and video update. So I hope you find this interesting.

To start with though, I just quickly want to plug a couple of upcoming events in June that will interest some of you. They’re for people all over the world to join in with, not just the UK. The more the merrier really, as it will help to spread vital awareness in both cases.

June 20th will be Nystagmus Awareness Day, which is its new permanent date, having moved from November. This year’s theme is Nystagmus In The Open, where people are being encouraged to do outdoor activities to raise funds and generate awareness. Sue, who runs the Nystagmus Network, is opening her garden for people to visit, for instance. People are also being invited to submit their stories online to show how amazing people with nystagmus are.

June 21st will then be Aniridia Day. This is the second time it’s been held, as it was a big success last year. This year’s awareness campaign is called Aniridia Sight, where we want people with aniridia to share a photo or video of a scene, and describe how they see it through their eyes. So the more people that get involved, the more we can show how varied the vision of people with aniridia is. And then there will hopefully be live webinars too, for people to discuss aniridia related topics e.g. doctors, researchers, people with aniridia, etc.

So now that’s out of the way, let me tell you what I’ve been up to in May.

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