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, vanother 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.
Tag: Aniridia Network
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 website, Facebook, Twitter 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.
Continue reading “My First Aniridia Network Conference”Share this:
November 2017 Favourites
Hello again, welcome to my latest Favourites roundup. Once again it’s a varied package, with some disability blog posts and events, a museum tour, no less than three musicals, another outing with Fashioneyesta, my first trip to a Lush store, the delights of the Lord Mayor’s Show, and more. So I hope you enjoy looking through it al!
Continue reading “November 2017 Favourites”Share this:
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 or a social media promotion, 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.
Continue reading “Building My New Social Network With A Visual Impairment”Share this:
June 2017 Favourites
Hi there, welcome back to the next instalment of my monthly updates. It’s hard to believe that it was the 6-month anniversary of my move to London in June, that’s certainly flown by!
Of course, I appreciate that this month is one that some people would rather forget, given the despicable attack on London Bridge and the devastating Grenfell Tower fire, and my thoughts go out to everyone affected by those terrible events.
But for me, I’ve happily continued with my explorations of London, taking advantage of the glorious weather to walk around a lot of different places, capturing lots of photos and videos along the way, as well as celebrating Aniridia Day, seeing TV shows being recorded and socialising with friends! Hence this is a very busy post, and I hope you enjoy it all!
Continue reading “June 2017 Favourites”Share this:
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 Sight Loss Resources page may help.
So this post, and a video to accompany it, is my contribution for the day, talking about my own achievements and ambitions, as someone living with aniridia. I hope you find it interesting!
Share this:
January 2017 Favourites
Well, here we are then. After all the planning we’ve done and the curveballs that have been thrown our way, my mother and I are finally living in London! 🙂 We’ve already had our first Christmas as new residents, and now 2017 has got off to a very busy and interesting start.
So I want to bring you up to date with what I’ve been doing over the past few weeks. And instead of posting journal entries like I was doing in Devon, with everything randomly mixed together, going forward I want to try and write more structured Favourites posts each month, where I share the things that I’ve been enjoying the most in the city and elsewhere. The aim is to include details of social events, museum exhibitions, theatre shows, walks, travel, TV, films, music and anything else that takes my fancy.
This first month has been all about settling in of course. There have been plenty of things to sort out at home and regarding my job, but I’ve also got out and about a lot too. In particular, I’ve attended several events by a social group called Thinking Bob, who I’ve been curious about for a while, plus I’ve also been to a museum and had a few nice walks. So there’s a lot to get through here, and I hope you enjoy it!
Continue reading “January 2017 Favourites”Share this:
Journal – October-November 2016 (London Visit)
Welcome back to my latest journal posts. There wasn’t anything worth writing about in September, but recent weeks have been pretty eventful.
Down in Devon I’ve been to a stand-up comedy show with some work colleagues, and there are updates on our house sale too. I’ve also paid another visit to our new place in London, where my Aunt gave me a little tour of the local area, I went to the Sight Village exhibition and an aniridia meetup, I oversaw the installation of a broadband line for homeworking, and I made contact with a fellow blogger I’ve been following for a while. So I hope you enjoy it all!
Continue reading “Journal – October-November 2016 (London Visit)”
Well Eye Never 