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 

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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.

Aniridia poem competition UK results

Aniridia Network UK have excitedly announced the winner of the UK and Ireland aniridia poetry competition plus the awarding of a special prize.

“I was impressed with the outstanding talent.” said judge and trustee Emily. We were delighted to receive 10 poems, as hoped a range of types, with different sentiments and from patients, parents and friends of all ages.

The judging panel, trustees Katie, Emily and Martin picked Katherine’s poem as the best, because it referred to many aspects of our condition and the spirit of Aniridia Day. She has won £20 of Amazon vouchers and her poem will be submitted to the international poetry competition where it could win a further 25 Euros.

Katherine said “I’m so thrilled my poem was liked and won! This is the first time I’ve ever shared one of my poems before in public so I was nervous!”

In addition, 9 year old Ellie wrote a lovely acrostic poem that got more than 43 Likes on Facebook. To recognise this the judges decided to award her a special £10 Amazon voucher prize! Ellie is really pleased that everyone liked her poem. She is absolutely thrilled with this news and she is very proud of herself.

Thank you to everyone who wrote poems, for spreading awareness and understanding of aniridia. We hope you and everyone else will take part in ‘Shining Success‘ the next part of the Aniridia Day 2017 campaign.

The winning two poems are below and you can read the other poems that were entered too.

Congenital Aniridia

Katherine

Aniridia is congenital in my family tree.
My mother, my daughter , and yes even me!
The cause PAX6 a faulty gene.
A condition most doctors have never seen.
With eight different eye conditions I am registered blind.
Using a cane or guide dog, my mobility i’ve been able to find.
Nystagmus, ptosis, cataract and photophobia.
Keratitis, diseased corneas and myopia.
Diagnosed with and treated. All these conditions i have got.
Due to this i have to visit my eye specialist a lot!
Sometimes this rare condition can make you feel alone!
But now thanks to the aniridia community I know I’m not on my own!
So please on this first ever Aniridia Day!
Let’s celebrate our uniqueness in each and every way!

By Katherine

Follow your dreams

9 year old girl
Ellie

Aniridia does not mean you cannot follow your dreams!
No irises sometimes mean that things are much brighter!
If it’s a sunny day sunglasses and a hat help me play!
Running is tricky when you can’t see well, but my friends always guide me safely until we hear the school bell.
In the dark I use a cane, because bumping into things causes pain!
Discos are dark, so it’s hard to see, but I love dancing so everyone helps me!
In class I sit at the front so I don’t miss a thing!
And sometimes my eyes will sting, so I just put some eyedrops in!

By Ellie, age 9

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

Bekah’s Aniridia

An entry to our international poetry competition by Dodie from the USA

Missing irises make her eyes dark like coal,
So her smile is the window to her soul
Uncontrolled eye movements make eyes flutter all around
glaucoma and cataracts also found.
Shadows can be scary, sometimes lights to bright
needing reassurance, everything will be all right.
I’ve heard her tell herself out loud, “It’s nothing to worry ‘bout”
a silly shadow on the wall, can’t hurt me at all.
Listening to music, she claps most vigorously
sound is very important, in a world that’s hard to see.
She wants to be included treated just the same
whether going down a slippery slide, or playing a card game.
She often can be found with a book, sometimes turned upside down
making up a silly story about a kitten or a clown.
Her enthusiasm brightens up a room, her singing a delight
she also can be stubborn, and won’t give in without a fight.
My wish is for hope, new technology, invention and insight
to help treat this rare disorder,  I offer prayers up every night!