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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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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Fireworks & Frankenstein, Sight Village & Socialising

Time for another little update on what I’ve been doing recently, as I was pretty busy at the beginning of this week, watching a fireworks display, attending another theatre show, going to a disability exhibition, and meeting other people with aniridia.

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Building My New Social Network With A Visual Impairment

I’ve shared overviews of this story as guest posts on Scope’s community forum and the Nystagmus Network’s newsletter. Many thanks to them both for featuring me! And if you’ve found me via one of those articles, hello and welcome! 🙂

On September 30th, I gave a talk at the Nystagmus Network’s Open Day about how I had been building a new social network for myself in London. It was my first time giving a public speech about myself, but it went really well. I spoke for about 15 minutes, then we had a group discussion for the next 15 minutes. It got a very positive response, and I got chatting to many people as a result of it, so I was very happy with it. And I’ve written blog posts about how I prepared for it and my experience at the Open Day.

So this post is a written version of that speech, and I’ve posted a video version that I filmed on the same evening. Both are longer than the actual speech I gave at the Open Day, as without constraints on time or length I’ve been able to explain things in a bit more detail. So the actual speech was a slightly more concise version of this, although 15 minutes was still quite a bit of time to fill!

Obviously my situation is unique to me, and everyone’s circumstances will be different in their own way. I’m just giving examples of the things I’ve done. The overall aim is to show that it’s important and worthwhile to try things that interest you and grasp opportunities when they arise, as you never know what will result from them. You may have to push yourself out of your comfort zone a bit, and I know that can be easier said than done. It was a challenge for me, and it still can be sometimes. But the more you try things, the more confident you’ll get, and you’ll soon start to reap the rewards of your efforts. Otherwise, you’ll always be asking yourself ‘what if’, which is never helpful.

So I hope you enjoy reading this. Thank you to Sue Ricketts and the Nystagmus Network for asking me to share my story at the Open Day, and to all those who responded to it so well.

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Aniridia Day – My Shining Success Story

Happy Aniridia Day! 🙂

Today we’re celebrating people’s achievements and ambitions with Aniridia, as part of the Shining Success campaign, for which I edited a promo video I’m very proud of. There are also Facebook and Twitter pages for the day, where people are sharing their stories, photos and videos to mark the occasion, so please do check them out.

It’s already bringing people together with aniridia who have never met before, and helping to spread a positive message of positivity, support, solidarity and hope for the future. And if you want to find aniridia support groups, the links on my Disability Links page may help.

So this post is my contribution for the day, talking about my own achievements and ambitions, as someone living with aniridia. This is also available as a video as well.

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Springing Into Action

It’s been a couple of months since I last made a post here. So now that Spring is upon us and the weather is improving, I thought I’d do a bit of a catch-up to let you know how things are going, as I have been busy lately. So this is going to be a long mixture of all sorts of things.

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