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?

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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

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.

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.

Call to action from President of Aniridia Europe

The words of the poem have been very cleverly formed in to a spiral to resemble two aniridic eyes with the eyebrows formed from from the title 'Aniridia'Dear friends

I want to remind and reinforce the invitation to join the celebration of Aniridia Day, next June 21th.

We encourage you and your association to organise different events to celebrate Aniridia Day. June 21st 2017 will be Wednesday. Maybe some events have to be organised the weekend before or after, to be successful. This is ok, too.

The Aniridia Day Organising Committee held a poetry competition and propose Shining Success campaign, but you can organise different events, like:

  • a sport competition or match,
  • a dressing-up contest,
  • dissemination of information
  • organising a conference in a hospital/eye clinic,
  • a theatre play,
  • participation in media (radio or tv),
  • dissemination of a professional involved in aniridia or a press release,
  • a fashion show,
  • a charity sale, etc.

All ideas/actions are welcome as long as they show a real but positive picture of the aniridia community.

We would very much appreciate if you could share these experiences and events in this mailing list community@aniridia.eu and send any questions and a report to contact@aniridiaday.org . It is very important to have a record of all the activities developed around this OUR DAY.

You can also take a picture with sunglasses of yourself together with your family or friends (also with sunglasses to empathise) and share them on social media on Aniridia Day and ask people to share it, too.

We are creating a wave that will reach every continent.
We are raising awareness about our disorder.
Aniridia will not be an unknown disease from this date on.
Everyone can contribute one way or the other.
JOIN US IN THIS EXCITING ACTION

I wish you a huge success on this day. Your success will be whole aniridia community´s success..

Warm regards.
Rosa Sánchez de Vega
President of Aniridia Europe