October 2018 Favourites

We’re deep into autumn now, with Christmas edging ever closer. And now that we’re well into the penultimate month of the year, it’s time for a look back at October to see what I got up to.

The major event, of course, was my charity abseil for nystagmus research, and you can find out all about it in my epic blog post and video. There are lots of photos and video highlights from the day, especially from the headcam I was wearing during my descent. So do go and check all of that out. Huge thanks to everyone who sponsored me, and you can still donate until 23 March 2019.

But there were still other bits and pieces going on during October as well. So I’m going to tell you about them here, and there’s also a video to go with this post as usual. I hope you enjoy my latest recap!

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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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My Assistive iPhone Features & Apps

Thank you to everybody for the lovely reactions to my previous post about My Visual Impairment Aids & Gadgets, especially after the RNIB kindly shared it on Facebook and Twitter, where it got a particularly big response. I’m very glad it’s proven so useful, and it’s been great to see other people sharing what they use as a result.

So this post and video is a follow-up to that, looking at the accessibility features and favourite apps I use on my iPhone. I’m not sponsored by anyone to do this or affiliated with any companies mentioned here, I just wanted to share the things that I use and enjoy. So I hope you find this post interesting, and feel free to share the features and apps that you use too.

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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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February 2018 Favourites

Well, what a way to start a new month, with snow all over the place! Winter has seemed very reluctant to let Spring take over, but hopefully things will warm up in the coming weeks now.

And the cold weather didn’t stopped February from being an eventful month. Following on from my January 2018 Favourites, it’s now time to look through what I’ve been enjoying in February. And even though it’s the shortest month, I seem to have packed quite a bit in! So I hope you enjoy this post and video for February.

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Rare Disease Day Photo Challenge

Update (March 1st) I won the challenge, much to my surprise! Thank you so much to Rare Disease UK! It was great fun being involved, because I loved the theme of the campaign, and I really enjoyed seeing other people’s photos. So very well done to all involved. We can all be proud of our efforts to raise awareness during the month! 🙂

Happy Rare Disease Day! 🙂

Today is a wonderful international opportunity to raise awareness of rare diseases, conditions, disabilities, etc, to educate people and highlight the need for greater funding and research. Here in the UK, it’s led by Rare Disease UK. But there are events taking place worldwide, so there will be related organisations in many countries.

1 in 17 people have a rare disease, meaning it’s a lot more common than you might think. So even if you don’t have one yourself, chances are you know somebody who does. And if you do have a rare condition, you’re certainly not alone.

There are over 6,000 rare diseases, affecting over 300 million people worldwide (including 30 million in Europe). That’s a huge number! So this is a day for all of us unusual rarities to get together, along with anyone and everyone who supports us and the cause in any way.

This year, the theme is “Show your rare, show you care”, and everyone can get involved, regardless of whether or they you have a rare disease. So that includes patients, families, carers, medical professionals, policy makers and members of the public.

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January 2018 Favourites

After a very eventful and successful 2017, I’ve been looking forward to seeing what 2018 would bring. And this year I want to try and get into the habit of doing monthly favourites posts, so you can get a good overview of what I’ve been enjoying, both out and about and at home. That way I can cover little things that I wouldn’t otherwise mention, as well as the bigger stuff that I’ve written longer posts on, which I’ll link to here.

So this is the first post, for January. This month I’ve been mostly doing things indoors given the cold weather outside. So I’ve been going out to various museums, and have also been to the theatre, while at home I’ve been watching a couple of the DVD sets I bought last year, to catch up on those. And I’m also making an effort to start listening to more audiobooks this year, as I only did one in 2017, which was bad of me (although, to be fair, book-reading wasn’t top of my to-do list having just moved to a huge city!).

So I’ve been keeping myself entertained in various ways, and I hope you enjoy this post and video recap of the month!

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