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.

Continue reading “May 2018 Favourites”

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.

Continue reading “My First Aniridia Network Conference”

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.

Continue reading “Aniridia Day – My Shining Success Story”