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

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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

Aniridia poetry international competition results

Woman and child wearing sunglasses and medals runningCongratulations 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
Kelly who is Health Consultant for the International WAGR Syndrome Association said “You didn’t tell me that it would be so hard! Every poem is just so heartfelt and creative and beautiful.”
Runners up poems were judged to be “To Patients with Aniridia”, “Bekah’s Aniridia” and “My Blue Black Eyes”.
All the poems were excellent and more poems were entered into the UK’s competition but this was decided to be the best in the world!:

Poker Pearls

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

Prats logoEschenbach logo

What is happening on Aniridia Day 21 June

IRIS Aniridia Day 2017 meeting421 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
At the hospital where the Spanish Aniridia association has their office there is an information desk to share leaflets and brochures about aniridia, followed by a gathering of supporters.
In Bulgaria Elena has created a leaflet about the importance of protecting eyes, particularly with aniridia, from the sun.
In Russia, they started early with a meet up in a cafe a few days ago
Later we will announce the winner of our international poetry competition
Most of the action will be online, including the Shining Success campaign to tell everyone about the achievements and ambitions of people in relation to aniridia. What will you say?

 

Eschenbach and Prats provide prizes for Aniridia Day campaigns

We are ecstatic to announce that two companies have very generously donated high quality sunglasses to be prizes in the Aniridia Day 2017  competitions.

The deal was arranged by Isabel who volunteers in Spain with Asociación Española de Aniridia.

The author of the poems judged to be the best in each of the Spanish and international poetry competitions will receive a pair of sunglasses with unisex frames, lateral anti-glare and lenses that block 100% of UVA and UVB rays made and gifted by:

  • Prats Industry: experts in low vision that make filters for individuals with specific ocular pathology.
  • ESCHENBACH: experts in vision technology products, eyewear, and optics.
    Prats logoEschenbach logo

We want to thank Prats and Eschenbach for their support with making the first ever Aniridia Day so great!

Two further pairs of sunglasses can also be won by the best submission to the Spanish and international Shining Success campaign.

Judges and result

The poems submitted to the international competition will be judged by:

  • Katherine Atkinson – UK
  • Galina Gening – Russia
  • Kelly Trout – USA

The winner and their poem will be announced on social media on Aniridia Day 21 June 2017. Please share the news.