Meet-ups 2018

Informal gatherings took place to celebrate Aniridia Day 2018. They brought together people affected by  aniridia to share experiences, stories and useful information.

 

Krasnodar – 21 June

Member of the Interregional Support Centre for patients with Aniridia “ Iris” met in a cafe in Russia.

Bashkortostan – 21 June

Also in Russia, families met to talk and celebrate in a park.

London – 20 June

Glen and James, Eileen, Chris, Eleanor. Keith and Matt met at London Victoria station for drinks and dinner. They also broadcast live on the internet to wish the world happy Nystagmus and Aniridia Day .

Cardiff – 17 June

Emily, who has aniridia along with her son, hosted a meet up on Sunday for people in South Wales. Four people with aniridia plus siblings and parents met to chat about medical experiences and day to day support over tea and pizza. They are planning to have another get together soon.

 

Advertisements

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