Support My Charity Abseil For Nystagmus Research!

I have something hugely exciting and important to announce in today’s post and videoI’m doing a charity abseil!!! It would mean the world if you could sponsor me for it, and I’ll gladly give you a shoutout in return! 🙂

On Sunday 23rd September, I will be abseiling 80 metres (262 feet) down the ArcelorMittal Orbit Tower in the Queen Elizabeth Olympic Park. The abseil is run by a company called Wire & Sky. I’ve never done an abseil before, so this is a massive one for a beginner, dangling off the UK’s tallest sculpture! The 20 mile views across London will be incredible though, so it’ll be worth fighting any nerves for!

The Orbit Tower and Olympic Stadium, at the Olympic Park in London

I’m taking on the challenge in partnership with the Nystagmus Network and Moorfields Eye Charity, to raise money for pioneering nystagmus research at Moorfields Eye Hospital and the University College London Institute of Ophthalmology (more details on all of those later in this post).

You can sponsor me via my JustGiving page wherever you are in the world.

JustGiving - Sponsor me now!

In the UK you can also text WENA80 followed by a space and your amount to 70070. The amount can be either £1, £2, £3, £4, £5 or £10 – e.g. WENA80 £5. The code stands for “Well Eye Never Abseil” if you’re wondering, and 80 represents the 80 metres. Clever, no?

A image of a black smartphone against a red background. The white screen of the phone, on its side in landscape mode, has red text saying Sponsor my abseil for nystagmus research! Text WENA80 £5 to 70070. In the bottom right corner of the red background is a credit for Just Text Giving by Vodafone.

Text donations are free for Vodafone customers, while other networks may charge, so check their standard rates first if need be. Your entire donation amount will go to the charity.

Also in the UK, via the website or text, you will be asked if you want to claim Gift Aid on your donation. If you’re a UK taxpayer, please say yes! The government will then add 25% on to your donation at no extra cost to you. So a £10 donation will be increased to £12.50. It really makes a big difference!

Whatever you can give, big or small, will receive my immense gratitude and a shoutout, because it all adds up! Or if you can’t donate, that’s absolutely fine – all I ask is that you at least share this post or my video or my JustGiving page as widely as you can, to help me raise awareness. Thank you so much! 🙂

Read on for more details about why I’m doing this.

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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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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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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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Growing Up With Sight Loss

When I started my blog and Youtube channel, I assumed that the only talking I’d be doing for people about my disability was purely from the comfort of my own home, reaching people through their computers and smart devices. But then, last year, I ended up giving my first ever public talk to adults at the Nystagmus Network Open Day, about building my new social network. It was a complete surprise and a completely new experience for me, and one that I assumed was going to be a one-off.

However, earlier this month I had the opportunity to give another talk, this time for a very different audience – primary school children, around 9 to 11 years old.  I won’t name the school or the people involved – they’re awesome and know who they are anyway – but what I want to do here is give you an overview of what I said. I wanted to take the time to write it down for posterity anyway, as I went over it in my head beforehand rather than writing a script.

So I figured you might find it interesting to read as well (or watch my video if you prefer), as it gives another perspective on my journey through life to date.

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