My First Aniridia Network Conference

Selfie of me taken in a full length mirror at home, wearing a white t-shirt with the Aniridia Network logo in the middle. It is a silhouette of an eyebrow over a pupil with a glint of light in it. Standing across the top of the brow are 6 differently coloured figures, like gingerbread men, holding hands.

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.

The conference took place at Resource For London, and over 100 people were in attendance, which was a record. And it even included delegates from other countries who had flown in especially for the event. So that was wonderful, and I gladly took the opportunity to chat to quite a few people. There was a good friend of mine from school who I loved catching up with, a child from the school I gave a talk at last month, a lady who had helped me with the Aniridia Day promo last year, a surprising number of people who were aware of my blog (a big hello if you read this post!), and others I didn’t know but was glad to meet.

People gathering in the meeting area at the conference, with exhibition tables around the edge and drinks on the large central tables.

I also got to talk to a couple of the speakers as well. Sue Ricketts from the Nystagmus Network gave a great talk about her charity. She and I have a good connection because I gave a speech at their Open Day last year, so it was great to meet and chat to her again.

Sue came to our conference because a lot of people with aniridia also have nystagmus, so they are like a sister charity to us in many ways. Not everybody with aniridia has nystagmus though, and nystagmus can come as part of the package with many eye conditions, or it can just happen on its own. So it’s not unique to aniridia patients, hence it has a separate charity. But it is common among many of us with aniridia.

Sue Ricketts talking to a lady at the Nystagmus Network table ,with a tall poster next to it giving details of the charity.

Me posing for a photo with Fern Lulham and her guide dog.I also got to meet motivational speaker Fern Lulham during the event, who has aniridia and nystagmus like me. I’d been aware of her through her Smile Finders Youtube channel in my early blogging days, but had never met her before or seen any of her public speaking.

She was an absolute delight to talk to, as she’s amazing and so friendly. And her presentation was fantastic, telling us about her life and inspiring the rest of us, through her great passion, hope and positivity. It was really uplifting and went down really well with the audience, so she definitely made a big impact.

Fern lives in the UK, but has studied in America, and is a radio personality who contributes to AMI Audio’s Kelly & Company show in Canada. And she’s spoken about the conference twice on the show, doing a preview a couple of days beforehand, and then her very positive reaction to the conference a couple of weeks later. It was great to get such wonderful international publicity for the conference in that way.

Fern’s talk was also to my advantage in the end, because it replaced my own. Things had fallen a little bit behind schedule, so her talk was moved to my slot to put things back on track. I think a few people were disappointed that I didn’t speak after all, which is very flattering! But, to be fair, I wasn’t actually meant to speak in the first place. I was a late addition to the agenda after another speaker had to pull out, so I was basically on standby in case I was needed. And as it turned out, I wasn’t, which made the day easier!

It made sense too, because my speech would have had some overlap with Fern’s. Although we’ve led very different lives, our overall feelings, lessons and messages are quite similar. So it would have been a bit repetitive for the audience in some ways. And she’s a far more professional public speaker than me, because it’s her job! However, that merely means my booking has been moved to next year’s conference instead. So that might give you an incentive to come along next year if you’re affected by aniridia and are keen to hear me!

But anyway, all the speakers this year were really good and very interesting. As well as Sue and Fern, we also heard about possible drug treatments for aniridia, research into the PAX6 gene, Access To Work, depression and mental health services in relation to the visually impaired, sleep and eye disease, the psychological impact of aniridia, and the work of the Aniridia Network itself in the Annual General meeting. So it was a good variety of topics.

Sure, there was a lot of information to listen to, and there’s no way you can take it all in. But because we were recording all of the presentations and have all the slides, we’re able to publish everything online for people to view at their leisure. So we’ll be posting them about once a week, to spread them out a bit. All the videos are going into a conference playlist, which will be updated as videos are published, with notificiations posted on their other social media channels of course.

Raffle draw at the conference. One lady holds up the ticket drawn from the bucket held by the lady next to her. Among the prizes on the table next to them is a large cuddly teddy bear.

It was an interesting new experience for me, having never done anything like that before, and not being a professional film-maker. But the recordings went well on the whole. We were trying out some new equipment as well, so inevitably there were a few issues that became apparent on watching things back. But as we were recording things in multiple ways, especially the audio, I’ve been able to edit together complete videos for all the talks, so nothing’s been missed.

It was my first time using Periscope as well. That’s how the charity have done live streaming before, so I was happy to give it a go this time. And it is handy, especially given its links to Twitter to help promote the broadcasts. All the streaming worked, and we got good replay figures afterwards, so people were definitely noticing, which was great. That said, using the app wasn’t entirely without its issues, as a few people had to be blocked and most of the videos didn’t save to the camera roll despite the option being enabled. So we’re going to look at whether Youtube or Facebook might be better for streaming in the future. But for my first attempt at streaming an event, I’m happy with how it went.

Photo of me sitting and watching one of the presentations. On the table next to me is my iPhone on a small tripod, standing on top of a couple of small boxes to give it the right height.

Once the main event was over, many of us went on to a social evening in the Chalk Farm area, where a goalball taster session was put on for those who wanted to take part. I was tempted to, but the option of pizza won over! I know, that’s bad of me! But after a busy day, I was rather peckish and just wanted to relax, plus I was enjoying chatting to my school friend and her mother, having not seen them in ages. And I wasn’t really dressed for rolling around on the floor in a gym either, having dressed smartly for the event in case I’d needed to give my speech. One day I should try goalball though, if only to satisfy my curiosity. I’m sure it’ll happen at some point.

And that was it. I really enjoyed the day, as did many other people given the feedback we’ve been receiving. There are plenty of posts, photos and videos to edit and publish on their website, Facebook, Twitter and Youtube pages, so keep an eye out there for lots more information about the day if you’re interested.

So I’m very happy with how my first conference went, as I got to meet lots of wonderful people and hear lots of interesting information. It’s well worth going if you’re affected by aniridia. And I’ll be looking forward to attending, and speaking at, next year’s event!

Author: Glen

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

3 thoughts on “My First Aniridia Network Conference”

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