Last year in the promotional video for our Shining Success campaign, Lisa promised to start learning a French. She started this year. Last week she prepared a presentation about herself in called J’ai une Aniridie (I have aniridia). Brilliant!
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.
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.
The Aniridia Day 2017 promotion video has been viewed nearly 300 times
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 😊❤
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:
We hope that aniridia associations around the world will want to put this in presentations, on web pages and resources such as leaflets.
You 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 firstname.lastname@example.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.
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.
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.
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.
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.
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:
- Patient Information Booth at the Mater University Hospital
- NRDO – National Rare Diseases Office
- Temple Street Children’s University Hospital, Child Health Department
- National League of the Blind of Ireland, Hill Street
- Our Lady’s Children’s Hospital, Crumlin, Ophthalmology Department
- The Royal Victoria Eye and Ear Hospital
- Fighting Blindness
Congratulations to Angie in Canada, the winner of our international poetry competition!
The poems were judged by an international panel from the aniridia community:
- Katherine Atkinson – UK
- Galina Gening – Russia
- Kelly Trout – USA
Rare, black beauties, fragile yet hardened,
Etched by life and plagued with pains.
My grandfather’s poker pearls, then my mother’s,
And now passed on to me.
A rarity and a curse for this family tree.
Unclouded jet blacks in youth I had.
Now I peer through frosted, flawed glass.
What is happening? Why can’t I see? Why can’t we cure this?
I can’t breathe.
Tired, I must protect these wounded gems.
So many questions, my life, an endless quest for answers.
Hoping, Wishing, Searching, through my years.
Familial, sporadic, unknown origins, does it even matter?
I discover and stare at molecular language in dismay.
It’s those broken polypeptides chains hurting my poor Aunt May
Dreams for a future looked dried up.
Please hear me, teacher, I won’t ever give up!
So badly I wanted what others had, unrestrained, easy lives.
Forbidden thoughts of careers kept crowding my mind.
How do I escape the legacy that dictates what I can never be?
How will I prove wrong and succeed?
Now I stare at blessed perfection, my own reflection in young healthy poker pearls
Time will not remain kind you see.
Uncertainty, Anxiety, Fear grips me
I can’t sleep.
How do I stop it, history’s cursed legacy?
Wishing she’d been gifted the root beer browns like the Richardson’s
Or the ancestral arctic blues as did her cousins, the Morin’s.
I broke my own heart gambling as she received those eerie blacks of the Rossignol’s.
In absolution, I must find strength and courage through my progressive losses
To keep these little black time bombs stable, no matter what the cost is.
Don’t worry so much maman!
My young Rossignol chirps me sweetly out of sorrows
The surprises of these poker pearls are for tomorrow. 2017
21 June 2017 is Aniridia Day. Around the world people affected by aniridia, their friends and relatives will be using this day to:
- hold events for people associated with aniridia to meet
- increase awareness of aniridia,
- raise funds
- recruit volunteers
- On Twitter follow, mention and retweet the @AniridiaDay Twitter account and the #ShiningSuccess Twitter hashtag.
- On Facebook join and post in our public Aniridia Day Facebook group to be seen by the maximum number of people and then share messages back to your timeline for your friends using the #ShiningSuccess Facebook tag.
People affected by aniridia came together today in a Moscow cafe to talk and hold an early celebration of Aniridia Day. Looks like it was a #ShiningSuccess!
For more information about this aniridia association, visit http://www.aniridia.ru/en