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Watch aniridia presentations online

We are will have a wonderful series of online presentations on Aniridia Day 21 June 2018.
People around the world will give live talks about aniridia that you can watch on your computer wherever you are. You will be able to ask questions too.
Coffee, laptop, notepad, pencils
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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.

Activities at hospital in Spain

The Spanish aniridia association had an information desk between 10am and 1.30pm on Aniridia Day in the hospital where they have their office. The aim was to share leaflets and brochures about what aniridia, the day and their organisation. At the end they wrote hashtags on balloons with some other messages before releasing them in to the air.

Watch this 30 second montage of the day on Twitter 

Meet up in Greece

Greeks Theoni and her son Markus who has aniridia, met another family affected by aniridia in a cafe to celebrate Aniridia Day. Russians Galina, her son Ramy and daughter Liza, who has aniridia flew in to meet them on the evening of 21 June 2017.

Theoni said:

We couldn’t hope for a better way to celebrate for Aniridia Greece on this special ANIRIDIA DAY !!!!!!!!! THANK YOU so much for this wonderful meeting !!!!! We have so much in common like if we knew each other for years !!!!!

Galina who is a member of the Board of Directors and Secretary of Aniridia Europe said:

The kids had a lot of fun. We discussed some points about Aniridia Greece starting as a independent organisation. We also talked also about mission and role of Aniridia Day in the future for people with aniridia in Greece.

Two women on a couch with two children sitting on their knees, all wearing sunglasses
Galina, Liza, Theoni, Markus

Awareness raising visits in Ireland

Eleanor and the wonderful guide dog Ava visited six of the Caring and Research & Development Services for the Blind in Ireland to distribute leaflets (pictured below) and promote awareness of Aniridia Day. Eleanor also spoke to their representatives ofNational Council for the Blind of Ireland and ChildVision by phone.

Eleanor is the Irish Representative for Aniridia Network UK, who has aniridia said

We have all worked so hard to bring this day to fruition. I have lived with this condition all my life and finally people are becoming aware of it and this is so important. Knowledge is key. Research into this condition is crucially important as people living with Aniridia are constantly living under the threat of complications which further decrease their vision, leading possibly to blindness.

The Ireland branch of ANUK was launched earlier this year at the headquarters of the NCBI.

NCBI published an article about aniridia in which their Chief Executive said

An international day to mark Aniridia is a hugely significant step in the right direction. This eye condition is highly rare and that brings its own complexities and difficulties. Research into aniridia is ongoing which, coupled with this concentrated worldwide focus on the condition, may lead to a breakthrough.

Huge thanks to everyone for their time and support.

The pictures below feature Eleanor and Ava at:

  1. Patient Information Booth at the Mater University Hospital
  2. NRDO – National Rare Diseases Office
  3. Temple Street Children’s University Hospital, Child Health Department
  4. National League of the Blind of Ireland, Hill Street
  5. Our Lady’s Children’s Hospital, Crumlin, Ophthalmology Department
  6. The Royal Victoria Eye and Ear Hospital
  7. Fighting Blindness