Participation survey results for Aniridia Day 2018

Group photo of three adults and three children holding Aniridia Day posters

We ran a quick online survey about participation in Aniridia Day 2018.

25 people responded, 11 of them from the United Kingdom.

Here are the results.

  • 88% read social media posts
  • about half posted on social media as part of the #AniridiaSight campaign or more generally about aniridia
  • less than half listened to webinars. Most of these listened to just 1, but some up to 5
  • 6 people rated the day negatively and 18 positively. 8 gave it maximum positive rating

People said they liked:

  • sharing: knowledge/stories/experiences/accomplishments/struggles
  • sense of: togetherness, unity, not being alone, positivity, ‘awesomeness of our rareness’
  • getting practical information such as contact details, research news and treatments
  • raising awareness

One person said:

“It was a special day, because so many people like me came together and chatted on an online. Everyone seemed so confident and it was clear they had high goals and resilience. Everyone was collectively spreading awareness of aniridia and fighting for their rights, such as research, less stigma, independence and equality.”

Things that could have been better included

  • earlier notice and instructions for organising activities and contacting members and doctors
  • better publicity of webinars and clearer instructions on how to join in on different devices, including and the need to register or not
  • clashes with other small charities special days
  • some with no sight felt excluded from #AniridiaSight campaign

For the next Aniridia Day people want:

  • more opportunities to meet other people locally
  • more, shorter webinars mainly by doctors
  • fundraising activities
Regarding the first request: there is no way for us to arrange meetings centrally. They are entirely down to you to organise. It is very simple: you just choose a suitable time and place and perhaps a fun activity too. We can then help you publicise the event. But if you want more meet ups you must make them happen yourselves.
Overall It is clear that we are doing the right activities. However we need to do better at getting more people to take part, especially in non-English speaking countries. This requires more volunteers and engagement by the associations in those countries
Thanks to everyone for answering the questions.
Together we can make Aniridia Day even better next time!
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Meet-ups 2018

Informal gatherings took place to celebrate Aniridia Day 2018. They brought together people affected by  aniridia to share experiences, stories and useful information.

 

Krasnodar – 21 June

Member of the Interregional Support Centre for patients with Aniridia “ Iris” met in a cafe in Russia.

Bashkortostan – 21 June

Also in Russia, families met to talk and celebrate in a park.

London – 20 June

Glen and James, Eileen, Chris, Eleanor. Keith and Matt met at London Victoria station for drinks and dinner. They also broadcast live on the internet to wish the world happy Nystagmus and Aniridia Day .

Cardiff – 17 June

Emily, who has aniridia along with her son, hosted a meet up on Sunday for people in South Wales. Four people with aniridia plus siblings and parents met to chat about medical experiences and day to day support over tea and pizza. They are planning to have another get together soon.

 

Aniridia Day 2018 review

Aniridia Day 2018 was a global educational event. Thank you to everyone who took part and made it happen.

Two men wearing Aniridia Network UK t-shirts and a laptop showing a webinar in progress‘Mission control’ for the day was run by James and Glen in London who took time off work to manage it from home.

Now that the day has ended, we want to say huge thanks to everybody who got involved. Whether you presented, posted, shared, fundraised, held a meet up, spread the word, or whatever: we couldn’t do this without all of your support and involvement.

James and Glen at Aniridia Day 2018 Headquarters

The Aniridia Sight contributions and webinars were all very insightful 😉

Social media activity

Glen said:

“My focus was on social media. I wouldn’t have had a job to do if nobody had posted anything. But it never stopped, there was always something going on. I’ve loved seeing everyone’s posts, photos and videos, and it’s wonderful that so many people from across the world have put time aside to share things and support our efforts. It all really helps, so thank you.”

Like last year we used sociograph.io to review what happened on the Aniridia Day Facebook group during the 2018 campaign. In short there was about half the activity in 2017.

There were 174 posts including:

  • 90 photos
  • 11 videos
  • 48 links
  • 25 statuses

People gave 4,300 reactions, shared 333 times and wrote 400 comments. Today the group has 784 members, up 17% on last year.

Meanwhile our Aniridia Day Twitter account put out 68 tweets which had 19.500 impressions. Our account was visited 400 times and 27 mentions.

We were very pleased to see the Aniridia Day posters featured in many photos. We will review the #AniridiaSight campaign later.

Webinars

We must also give huge credit to James for taking charge of everything and running the webinars. Glen added:

I can vouch for the fact that he’s worked incredibly hard for over 12 hours straight to keep things going, on top of all the preparations before the day. And he still has work to do after today to assess and collate everything. His job is far from done! I’m glad I’ve been able to ease the burden in some ways, but even so, I wouldn’t have been doing any of my work if it weren’t for him doing all of his. So thank you James, you were superb today!
I’m certainly proud I was able to contribute today, I’m very glad I put the time aside for it. So on that note, like James, I’m off for a well-earned rest. Thank you all so much for taking part, you’re all amazing! 👍😎

There were a total of 12 hours of webinars broadcast in 4 different languages, and speakers from Russian, Egypt, Spain, Germany and the UK.

Big thanks as well to the Aniridia Day Organising Committee , who spent a lot of time and effort planning and preparing. As a witness to some of their discussions, I’ve seen how much work has had to go into it – booking presenters , organising the schedule and testing the technology are major tasks on their own, as well as publishing content on the website, promoting the day and so on.

Excellent results

Given the positive reactions we’ve had from many people, it’s been well worth it. In particular, this Facebook post by Haya in Abu Dhabi summed up why we do it.

Aniridia Day avatarHaya 

Happy Aniridia day everyone!

Firstly, I would like to say thank you so much to whoever set up this Facebook group. And the webinars today were amazing and absolutely inspiring. I have never met anyone with aniridia before and at that time I felt isolated and different (in a negative way). It means a lot to me to see and meet so many other people with aniridia who are so strong in spirit. It is also so great to see so many people raising awareness.

My eye condition has affected both me and my family in a lot of ways. As I’m sure it has for many families worldwide. It has impacted my schooling (in the past). Unfortunately I have been rejected by some schools due to my visual imapirment. It has impacted my social skills, friendships, independence, confidence.

But this day isn’t about how we’ve fallen down. But it’s about rising up today. and NOT just today, every day as each day can be a challenge.

Thanks to my family and support networks on social media, my new school. aniridia hasn’t stopped me from doing things I love and enjoy, as I’ve just finished my A-levels, I love travelling, photography and sight seeing such as sunsets.

Having aniridia will never stop me from knowing how beautiful this world is. Looking around me and outside makes me appreciate the vision I do have. I hope everyone who has aniridia out there in the world is staying strong. We can do this and I believe in you all! We will never give up, we will carry on fighting for awareness, rights, equality, more research.

I know some people may feel sorry for us. Mabye becausewe have multiple eye conditions and that’s okay, But it’s honestly not needed. Personally, my eye condition has been a blessing. It has created a strong and positive spirit inside of me. I choose to see aniridia as not a barrier but as an ongoing hurdle which we can overcome one step at a time. Many people around me, particularly my family have made realise the beautify of difference. I wouldn’t be here if it wasn’t for my family. Therefore I choose not to place ‘dis’ in my ability.

Have an Amazing rest of the day everyone ❤️
Lots of love, Haya.

James rounded off the day with a Live video to warmly thank all the participants, and highlight some of the things we learned from them.

Looking to the future

If you can get involved with the planning and running of the Aniridia Day 2019, or just have some ideas, that would be awesome: Contact us. Aniridia Day can only get bigger and better if we have a bigger group of people involved from the outset. This may only be the event’s 2nd year, but both years have already shown in abundance what a beneficial impact it has. There is overwhelming evidence that getting involved enables us to make a big difference to many people though support, reassurance and information, including people with aniridia who have never previously had contact with anyone else like themselves. So your time will absolutely be well spent.

So what shall we do next year and who will do it?

Aniridia Day Posters

We would love to see photos of you celebrating Aniridia Day, wherever you are in the world. And we’re looking forward to people sharing their Aniridia Sight photos too.

We’ve produced a couple of posters that you can print off and use in your photos, to show that you’re supporting Aniridia Day. You can hold them up in front of you or put them on the wall, for example.

How far around the world can we spread the Aniridia Day logo? How many people can we get holding it up? Take your photos and share them with us on 21 June!

Poster 1

Poster showing the Aniridia Day logo - a cartoon image of the Earth, wearing sunglasses, smiling and giving 2 thumbs up. Above this are the words Supporting Aniridia Day. Below it is the website address AniridiaDay.org and the Twitter handle @AniridiaDay.The first poster has “Supporting Aniridia Day” at the top, above the logo in the centre. At the bottom is our website and social media details.

The logo shows a cartoon image of the Earth, wearing sunglasses, smiling and giving 2 thumbs up.

Poster 2

Poster showing the Aniridia Day logo - a cartoon image of the Earth, wearing sunglasses, smiling and giving 2 thumbs up. Above it is a space to enter an activity or location, followed by the words Supporting Aniridia Day. Below it is the website address AniridiaDay.org and the Twitter handle @AniridiaDay.

The second poster is very similar, but has an extra space at the top to write your activity or location. We’ve included a Word version with a box that you can type into at the top.

So you could tell us about a special event that you’re doing, or let us know what city or country you’re in. We’d really like to see how and where you’re enjoying the day!

 

Appeal for people to talk online about aniridia

Coffee, laptop, notepad, pencilsThe next Aniridia Day is on 21 June 2018.
Could you speak at an online event to celebrate the day and improve understanding of aniridia? Do you know a patient, parent or doctor who would?
Our plan this year is to hold several webinars about aniridia during the day, that people can watch or take part in wherever they live.
This could take various forms (perhaps followed by questions from the audience):
  • presentation
  • interview
  • panel debate
Another option is discussion on a subject that anyone can take part in. This would still need a someone to lead and manage the session.
The subjects could be narrowly or broadly defined. The target audience could also be small or large: any parents, patients, doctors, or people in a particular country or having a specific surgery related to aniridia.
You can choose the local time and language of the session.
Here are some ideas, but we want to you to invent your own too:
  • a person with aniridia hosting a ‘Ask me anything’ or demonstrating a screenreader
  • an open chat for anyone affected by aniridia in Australia
  • a talk and answers to questions by a aniridia doctor in Russian
  • a semi-scripted conversation between two parents
  • simultaneously watching of a YouTube video followed by questions/debate

An example of the first idea is James’s Facebook Live for Aniridia Day 2017.

We plan you use either join.me or appear.in internet conferencing systems . You will just need a computer or a smartphone. If you have a webcam you could use it, or share your screen, or just use audio. We will send you instructions in advance.
We need people like you, all around the world to run these webinars
If you are interested in being a speaker/host write to contact@aniridiaday.org as soon as possible, what you want the subject and format and time (GMT) to be, so we can advertise it.

Aniridia Day 2017 statistics

Facebook

We used sociograph.io to review what happened on the Aniridia Day Facebook group during the 2017 campaign

There were 284 posts by 147 authors. These included:

  • 153 photos
  • 25 videos
  • 29 links
  • 77 statuses

There were 110 different people commenting and another 870 reacted to posts. They gave 8,500 reactions, shared 277 times and wrote 400 comments!

On 21 June 17 alone there were

  • 139 posts
  • 4878 reactions
  • 144 comments

Today the group has 566 members.

Twitter

Meanwhile the Aniridia Day Twitter account tells us in June our tweets were seen 9,000 times, were retweeted 88 times and liked 75 times.

YouTube

The Aniridia Day 2017 promotion video has been viewed nearly 300 times

The Shiniest Success

A family in the UK have won a pair of high quality sunglasses for posting the best #ShiningSuccess story on Aniridia Day. This post on Facebook by Caryl received an amazing 161 Likes or Loves!

This is our beautiful daughter Mari, she has just turned 5 and is absolutely amazing. She has WAGR syndrome and Aniridia. She has had a total of 11 surgeries so far and chemotherapy as she developed Wilm’s tumour just before her first birthday. Despite the challenges she’s faced, she never complains and is so happy, full of life and determined. She doesn’t let her condition stop her from doing anything, her vision is poor and she is registered blind, but she rides her bike, goes to swimming lessons, dance lessons and everything else her friends do. We are so proud of her and wouldn’t change her for the world 😊
5 photos of a girl, incluidng one in dance studio

WAGR is a extremely rare condition of which aniridia is just one part. For more details visit the International WAGR Syndrome Association.
Our thanks go to the companies, congratulations to the winners and our unending gratitude to everyone who wrote, commented on, reacted to and shared posts on Aniridia Day.

Aniridia related word cloud

As part of Aniridia Day 2017 we asked people around the world to tel us the words they associated with aniridia. The response was amazing – varied and fascinating.

For example ‘disabled’ was never mentioned while three people said ‘warrior’.

374 unique words were suggested among the 870 total. But there some were still variations, such as ‘absence’ and ‘lack’ or ‘iris’ and ‘irises’. So we used judgement to simplify the list down to 287 different words and phrases.

Next we used the Wordart website and a bit of Photoshop to form these words into an aniridic eye shape, where the most popular words appear the largest. We used contrasting general iris colours plus some white and bright yellow where appropriate for the text.

Here is the resulting Aniridia Word Cloud – click it to see a larger version in a new window:

A black stylised aniridic eye shape filled with words of different colours such as 'cataracts' 'light' and 'determined'

We hope that aniridia associations around the world will want to put this in presentations, on web pages and resources such as leaflets.

BY NC Creative Commons LicenseYou are free to use the Aniridia Word Cloud by Aniridia Day under a Creative Commons Attribution-NonCommercial 4.0 International License .
We encourage you to use it on material that promote and fundraise for aniridia non-profit organisations. Others can negotiate usage in exchange for a suitable donation to aniridia research.

If you would like a version in your language, contact info@aniridiaday.org and we will send you the word list. Send a translated list back to us and we will create the graphic for you.

Thanks very much to James and Glen in the UK for devising and delivering this project.