June 2018 Favourites

Time for another monthly favourites post and video, this time looking back over June. It was a significant month on social media for a few reasons, plus I also got to see 2 theatre shows, went out to a few museums and did a few walking tours in the nice weather. So there’s plenty to mention.

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My Visual Impairment Aids & Gadgets

I use various things to assist me in my day-to-day life as a visually impaired person, just to make things easier or more accessible. It means I can be independent and do many things that normal people do. So in other words, I’m still leading a normal life, it’s just that I do some things a bit differently to people with regular sight.

Naturally my iPhone is a huge help these days, but I’ll talk about the features and apps I use there in a separate post. In the meantime, you can see a list of my apps here, with an older video about them that I’ll update when I do a new post.

So in this post and video I’m going to tell you about various other aids and gadgets that I use, and a few used by my mother as well, as she’s blind. I’m not affiliated with or sponsored by any companies mentioned here, and these are all my own opinions.

So I hope you find this post interesting. And let me know if there are any particular aids or gadgets that you use a lot, or if there’s anything you recommend I should check out.

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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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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.

Sue Ricketts talking to a lady at the Nystagmus Network table ,with a tall poster next to it giving details of the charity.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.

The Aniridia Day logo is a cartoon style image of the Earth, wearing sunglasses, smiling and giving a double thumbs up. Curving over the top, in yellow text with black outline, are the words “Aniridia Day”. Below the Earth in bold black text is 21 June, and below that the address for aniridiaday.org.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. If you’d be interested in doing a webinar on the day, please fill out the form to sign up.

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

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April 2018 Favourites

Time for another monthly favourites post, and April was very busy for me. There were a couple of big important events, a couple of interesting museum visits, another theatre trip, and a few nice walks now that the weather’s improving. So I hope you enjoy this little post and video recap of what I got up to.

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Disabled Blogger Tag

This Q&A tag is a wonderful creation by Elin at My Blurred World who recognised that, in amongst all of the many blogger tags out there, disabled bloggers didn’t have a tag for themselves. I’m one of the people she nominated to do it, and I’ve also been nominated by The Invisible Vision Project, Amanda Gene and Life Of A Blind Girl, so thank you to all of you! 🙂

So here are my answers, as a post and a video. I hope you enjoy it and find it interesting!

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My First Aniridia Network Conference

One of the first people I met after moving to London last year was James, a trustee at the Aniridia Network. He got in touch after he saw me writing about aniridia on my blog, and noticed that we had other things in common too. So we met up and became friends, which was a great welcome to London in my early days here.

Over the months since then, I’ve became a voluntary communications officer for the charity, which involves helping out with blog posts, social media content and email newsletters, as and when time permits. One of the first things we did together was to edit the promo video for the first Aniridia Day last year, which was very successful.

And now the latest project has been recording and publishing material relating to the Aniridia Network Conference, which took place on 14 April. It’s their flagship annual event, bringing together people with aniridia, parents of children with the condition, medical professionals, researchers, etc, for a day of presentations, activities, socialising and information gathering.

And this was my first time at the conference, so I was really looking forward to it. Not only would I be helping out with filming, but I was also asked to give a speech there as well, so it looked set to be a very busy day!

So in this post I want to tell you how it went. And this is just my own personal perspective, this isn’t part of my social media work for the charity. They are of course welcome to quote from this post, but they haven’t asked or sponsored me to write this. You can see their own updates about the event, including photos, videos and feedback, on their websiteFacebookTwitter and Youtube pages, with much more to share over the coming days and weeks. But for now, here’s my own experience of the day.

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