June 2019 Favourites

We’ve reached the halfway point in the year, and summer is finally blessing us with decent weather. And I’ve had a very busy month!

Firstly, there have been some disability related developments, most of them positive. In particular, I’ve spoken at a conference, been a guest on a podcast, and I was filmed for another documentary. So my visual impairment led to a few great opportunities in quick succession, I’m happy to say.

On the downside, I’ve finally received the call-up letter to switch from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). This basically means I have to fill out a huge form about how my disability affects me, and then have a face-to-face assessment with a health professional, so the government can decide if I’m entitled to benefit payments. It sounds relatively simple when worded like that, but most disabled people will tell you it’s anything but. So that’s going to be on my mind a lot over the next couple of months at least, and I’m not looking forward to the process. But I’ll let you know how it goes at a later date. I’m not going to bore you with a rant about it in this post!

Thankfully, apart from that, I’ve been able to enjoy the month in many other ways. I went on a lovely weekend break with my girlfriend, I’ve been out in London for more exhibitions and walks, my girlfriend and I enjoyed a new film at the cinema, and I’ve enjoyed new TV shows and music releases at home. So there’s plenty to get through. As always, I’m not sponsored by anyone mentioned here, I’m just sharing these things because I enjoyed them. And I hope you enjoy this month’s post and video!

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2018 Review

My second year in London has flown by, and what an incredible year it’s been, full of even bigger surprises and adventures than the first. Raising £920 from my charity abseil for nystagmus research and giving a speech to primary school children about growing up with sight loss were 2 of my biggest and most surprising achievements this year without a doubt, but there’s been so much more going on as well.

I really do feel like I’ve settled in properly now. I’ll always want to experiment with new things and meet new people, that’s one of the many great things that living in such a wonderful city enables you to do. But the foundations I laid by doing that in 2017 definitely enabled me to have more confidence in 2018, so I had a much better idea of the things I enjoyed doing most, I was less shy around people, and I made more friends on an individual level beyond just going to social groups.

My blogging has also gone well this year. It’s only ever been a hobby on the side – I’m not after fame or money or PR opportunities or anything like that – so I’ve never been worried about the numbers. But it is nice to check the figures at the end of the year, and I’m delighted that my subscriber counts have gone up so well:

  • Blog = 132 followers (more than doubled from 60 last year).
  • Youtube = 400 subscribers (doubled from 200).
  • Twitter = 570 followers (nearly doubled from 300).
  • Instagram = 300 followers (more than trebled from 90).
  • Facebook = 63 followers (my page was still very new back in 2017, so I didn’t note the figure back then).

They may not be huge numbers compared to some, but they’re great for me, and my efforts have already been far more rewarding than I ever could have anticipated. I’ve continued to get many amazing opportunities and lots of wonderful feedback, been invited to do various guests posts, and have made wonderful friends in person as well as online, all as a direct result of my posts and videos. So I’m getting far more success and satisfaction from this than I’d ever expected or could have hoped for, and if things continue to go so well then I’ll be very happy!

So thank you ever so much to everyone who has followed and supported my adventures, whether you’ve joined over the past year or have been with me since I started this blog nearly 3 years ago. It’s greatly appreciated that you find my posts interesting, entertaining and inspiring, and I hope you’ll continue to follow me in 2019.

But before we get into the new year, here’s a look back at what I’ve been up to in 2018. I’ve published Favourites posts and videos for every month, which you can get to by clicking the monthly headings below. And you can also see more in-depth posts, photos and videos about particular things linked throughout the text in bold (but there will be even more links in the Favourites posts themselves of course).

So I hope you enjoy this recap of the year, and thank you again for being a part of it and sharing it with me. And a very Happy New Year too! I hope that 2019 is a great one for you! 🙂

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August 2018 Favourites

It’s now time to do my August Favourites post and video, to bring myself up to date, before I get into an eventful September. August was again busy on the social media front, and there was important stuff going on at home too. But I also had time to go out and do a nice variety of things as well. So it was another productive and enjoyable month, and I hope you enjoy reading about it.

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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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Aniridia Day – My Aniridia Sight

Happy Aniridia Day! Following the shining success of last year’s launch event, this year it’s back and there’s loads going on today.

For starters, there are hours of live webinars taking place all day, with talks and Q&A sessions by patients, parents, doctors and researchers from all over the world. And I’m involved in one of them, because myself and James Buller will be discussing living with aniridia. So do join us if you can!

But the other major part of the day is the Aniridia Sight campaign, where people post a photo of a scene, and then describe how they see the same scene from the same position – i.e. when they take the place of the camera, what can they see with their own eyes?

So in this post, I’m going to share my contribution to the Aniridia Sight campaign. And you can do the same, by sharing your Aniridia Sight photos and descriptions to the Aniridia Day Facebook group, or posting on social media with hashtag #AniridiaSight and tagging @AniridiaDay. I hope you all have a great day, and you find the following description about my sight interesting.

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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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