20 e 21 giugno 2020 in Live Streaming su Youtube, Facebook e Twitter! "Inclusione significa esserci nonostante tutto soprattutto in digitale!" Aniridia Italiana, Aniridia InCloud

Aniridia InCloud italiano


Per celebrare la Giornata Aniridia nel 2020, Aniridia Italiana sta svolgendo le seguenti attività in italiano. Guarda altri video sul canale YouTube di Aniridia Italiana.

To celebrate Aniridia Day in 2020, the Italian Aniridia association is running the following onlne activities in Italian.

See also: Webinars in English, Webinars in español/Spanish

All times Central European (Summer) Time (UTC+2)

Saturday 20 June 2020,

10:30am Wild kids

Online presentation of the European project “Looking out for a school for all: early educational inclusion for students with low vision”,

11:20am Aniridia in House

Online round table on Clinical and rehabilitative management of aniridia patients

3:00pm Work in progress

Online round table on social and work inclusion

9:00pm Reading In the Dark Flash Mob,

When the world comes to a lockdown, cars stop, movement is not allowed and everything around you seems to no longer have the same shape and texture, the only way to stay alive is clinging with all your strength to your mind.A wonderful universe that doesn’t need to see to travel far away. A wonderful engine that just have to listen to get started and that nobody can stop, harness, sedate or block.Hearing the sounds, perceiving the smells, imagining the colors, thinking about the dimensions, idealizing a place … all simple operations if supported by reading.

When we understood that we could not meet face to face as we had planned, we thought of a digital flash mob, as many have done in recent months, filling their homes with the notes of great songs from the past.Well, we are perhaps more intimate and instead of songs we have chosen the words of great authors.

On Aniridia Day, we will invite you to listen in the dark to those words that will give us the courage that we all must have to get back on our feet despite everything, and smile, and fight.

Sunday 21 June 2020

3:00pm The Great Quiz

Oh yes, this is not just a game, not just a way of being together, not just the biggest interactive digital activity you’ve ever participated in. This is an encounter and clash of cultures, it is life that flows through your veins. It is (and we do not say it for fun) the result of hard work and great creativity of a group of young men and women who have put into it their hearts and souls, their desires and commitment, but above all the sparkling joy that only young people can bring. Everyone can participate in the Kahoot quiz, it is easy to do. The questions can be accessed both from mobile and from desktop through a link that will be sent in the chat of a live streaming managed by Matteo, Veronica, Viviana and Edoardo. While the four of them speak as in a radio broadcast, the rest of the participants will answer the questions. The system will then automatically create a ranking and if the participants pass the round, they will receive a link to access the next level. There will be a prize for the winner.

On youTube

Watch pre-recorded interviews with updates on aniridia genetics and on the European project “Aniridia-Net: Networking to address an unmet medical, scientific, and societal challenge”

Plans for Aniridia Day 21 June 2019

For this year’s Aniridia Day, we want you to focus on possibilities to:

  1. improve understanding of aniridia and social inclusion
  2. support people (with children) with aniridia
  3. raise funds for the European Aniridia Conference 2020 in the UK
  4. empower national aniridia associations

Check what your local aniridia association is planning but here are the basic ideas.

#CanDoWithAniridia

 

Woman rock climbing
What Jessica #CanDoWithAniridia

On social media share a photo/video with an explanation that shows what can be done as a job, hobby, sport or education – while living with aniridia.

Tag your Twitter/Instagram/Facebook posts with: #CanDoWithAniridia and @AniridiaDay
On Facebook: join and post in the public Aniridia Day group.

Like, comment on and share what others post too.

Highlight the posts to researchers, medical organisations, celebrities, sports people etc. and ask them to share the posts with their followers

Events

Group photo of three adults and three children holding Aniridia Day postersGathering with others living with aniridia is lots of fun. Take the initiative: pick a time and place and advertise it for people to come to together talk with each other.

You can also organise a stall or presentation or other activities to educate people about aniridia in: schools, libraries, hospitals or other public places.

Ideally, these should happen on Aniridia Day but other dates are good too.

Remember to post a picture on social media about what you did too, tagging @AniridiaDay

Fundraising

The 5th European Aniridia Conference is planned to be in London on 14-16 August 2020.

It will bring together the world’s top aniridia doctors and researchers to improve treatments. The benefits will be felt by all patients worldwide, through the impact of clinical guidelines, scientific articles, and research projects.

Aniridia Network urgently needs £40,000 to make it possible Please do something to help reach that target such as running a cake stall or make a donation. Profits and donations can be paid in to the European Aniridia Conference 2020 fund.

Cake stallperson in stocks having wet sponges thrown at them

Aniridia associations can also make appeals or organise activities to raise funds for their own purposes. One idea is to collect artwork by children with aniridia and sell them online.

Volunteer

There are many possible ways to give practical help to your local aniridia organisation or Aniridia Europe. Think about the skills you currently have or would like to develop that would be useful and contact them to offer your time.

Aniridia groups prepare

If you run an aniridia association or social media group, please translate and adapt these instructions and share with as many people as you can to encourage them to participate in Aniridia Day 2019.

Organise any other activities that you want as well. Tell us about your plans so we can share them here too.

Whatever you do, do it in style: order clothing and other merchandise with the Aniridia Day logo from our brand new online shop. All sales raise money for science on aniridia.

Baseball cap with Aniridia Day logo on white with black peak and sidesT-shirt with aniridia logo, white with navy sleaves and collarMessenger bag with Aniridia Day logo

Here’s a video about the day

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.

 

Webinars 2018

Coffee cup, laptop with a person on screen, notepad and pens

We had a wonderful series of online presentations on Aniridia Day 21 June 2018.

View the webinar subjects and schedule.

People around the world gave live talks about aniridia for people to watch on computer wherever they were and ask questions too.

The presenters were an amazing mix of experts including people with aniridia, parents and doctors, from Russia to Spain.

We recorded most of the webinars and published them later on the Aniridia Day YouTube channel.

People could also join in by doing a impromptu webinar themselves, using systems such as Facebook Live, YouTube Live or Periscope. An example this is: James’s Facebook Live for Aniridia Day 2017.

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