Out Of Orbit – My Charity Nystagmus Abseil!

We did it! 🙂 On Sunday 21 October, after a month’s delay due to the typical British weather, I finally got to do my charity abseil down the ArcelorMittal Orbit Tower in aid of nystagmus research. That’s a drop of 80 metres (262 feet) from the UK’s tallest sculpture!

It was my first ever fundraising challenge and my first ever abseil, and therefore a big deal for a beginner like me. And it was an amazing experience, which I’m excited to tell you about in this post. I’ve also made a video that includes headcam footage from my descent, so do check that out as well.

Don’t forget you can still sponsor me until 23 March 2019. And thank you so much to everyone who has donated so far. Look out for your name at the end of this post and in the credits of my video (unless you were anonymous of course). Anybody who donates later will be added to this post and will get a shoutout in later videos too.

So I hope you enjoy reading about my abseil adventure, including my fundraising achievements and what happened on the day itself! Thanks again for your support!

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September 2018 Favourites

Time for another monthly update, and it’s fair to say that September was very busy and productive, as well as throwing up one or two surprises, which in turn are paving the way for a very interesting October. There is of course a video to go with this post, and I hope you enjoy this little catch-up as usual!

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Nystagmus Network Open Day 2018

 

Even though my abseil for nystagmus research has had to be postponed (it’ll now be on 21st October), nystagmus has still been the big topic this month, because on Saturday I attended the annual Open Day held by the Nystagmus Network.

This was my second time going to this event, following my experience last year when I gave my first public talk. So this year was much more relaxed, because I didn’t have to do anything! And it was a wonderful day, so I thought I’d give an overview of how it went.

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Support My Charity Abseil For Nystagmus Research!

PLEASE NOTE: The original date was cancelled due to bad weather. The abseil will now take place on Sunday 21st October.

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 21st October, 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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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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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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