Support My Charity Abseil For Nystagmus Research!

Leaflet called Abseil For Moorfields. Central image shows a multi-coloured illustration of the Orbit Tower, a tall structure with lots of curves and a helter skelter slide running down the outside. To its left is a photo of a lady waving as she prepares to do her abseil. To the right is text inviting people to join in the abseil on Sunday 23rd September 2018.

NOTE: The abseil has been postponed due to severe weather. We are currently trying to reschedule for October, and I will let you know when I have a new date. So please keep donating, it will still happen!

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.

I’ve had nystagmus since birth, as a side-effect of aniridia. Nystagmus basically means my eyes wobble and shake all the time, and I have no control over it. As a result, I can’t focus on things easily – I need to have them close up or enlarged.

It hasn’t stopped me leading a happy and successful life though. I was bullied in my early childhood, which led to serious confidence issues. But I worked through it over time to get good qualifications, secure a decent job and make lots of friends, and these days I love going out and about and doing all sorts of exciting things.

But the experience differs widely from person to person, and the amount of sight loss varies considerably amongst those with the condition. This is because nystagmus affects at least 1 in 1,000 people, with some estimates suggesting 2 in every 1,000. It can often come as part of the package with many eye conditions and other syndromes (e.g. Down’s Syndrome and albinism). But it can also occur on its own as well.

Nystagmus is a lifelong condition and there is no known cure.

Charities like the Nystagmus Network are therefore a vital source of information and support for those affected by the condition. I’m personally a member of the charity, and was greatly honoured to give a talk at their Open Day last year. I got to meet lots of wonderful people that day, and will do so again at this year’s event. You can find out more about the Nystagmus Network in this presentation by Sue Ricketts from this year’s Aniridia Network Conference.

So when I saw the invitation to do the abseil with them, especially as it’s very near to where I live as well, I had to take up the opportunity. Being 80 metres up, taking in views of London stretching 20 miles into the distance, and raising money for charity in the process – who wouldn’t be tempted by that?!

The funds I raise will go towards significant research into nystagmus, which will benefit the many thousands of people living with the condition.

For instance, Mr Vijay Tailor is currently investigating congenital nystagmus and visual crowding at Moorfields Eye Hospital, while their research partners at the University College London Institute of Ophthalmology are pioneering the use of magnetic implants to control the rapid eye movements associated with acquired nystagmus, led by Dr Parashkev Nachev. And who knows what their research could lead to with sufficient funding? Technology, medicine and scientific knowledge is advancing all the time, so it’s fascinating to see what the future holds.

You can find out more about the work of all the organisations mentioned above at these links:

You can also find out more about the effects of nystagmus in my playlist of other Youtubers who have posted about their experiences with the condition.

So I would be immensely grateful to receive your support and sponsorship for this challenge. I’m full of nervous excitement about the abseil, as it’s a very big deal for me to do something so new. But if I know I have your backing, it’ll be more than worthwhile pushing myself over the edge, quite literally!

So please donate if you can, or at least share this post or my JustGiving page as widely as possible, so other people can be aware and have the chance to contribute to a great cause. Thank you so much! 🙂

JustGiving - Sponsor me now!
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.

Me smiling and holding up a piece of paper showing a handwritten quote I've come up with. It says: “My impairment’s just a dropped stitch in life’s rich tapestry. I’m successful, independent, it’s no barrier to me.”

Author: Glen

Love London, love a laugh, love life. Visually impaired blogger & Youtuber with aniridia & nystagmus, posting about my experiences & adventures.

14 thoughts on “Support My Charity Abseil For Nystagmus Research!”

  1. Well done! I’ve done some fundraising for Moorfields Eye Charity (their Eye to Eye walk and various cake sake events) but I wouldn’t be brave enough to do this! I’ll sponsor you in a mo and will also share your post. Good luck and well done!

    Liked by 1 person

    1. Fantastic, thank you so much for the support! 🙂 It’s my first time raising money for Moorfields, and they’ve been very encouraging and supportive, and obviously do great work. So if this goes well it won’t be the last time I fundraise for them.

      Liked by 1 person

      1. I’ve donated but my comment isn’t showing on your JustGiving page so hopefully it’s all gone through okay! Let me know if any problems. Moorfields are brilliant- I’ve been a patient there since 2014.

        Liked by 1 person

      2. Thank you so much! 🙂 I can see your very kind £10 donation when I go into my dashboard, along with another donation that hasn’t shown up on the main page yet. So I’ll keep an eye on it. I don’t know if it being a bank holiday weekend slows processing down somehow. In any case, it seems a few other people on Twitter are also having issues with their JG pages not updating, so it’s not just me thankfully. I’ll keep you posted!

        Liked by 1 person

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