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Webinars 2020

Enjoy 2 hours of free, informative, online presentations and discussions about aniridia on 21 June 2020.

Celebrate annual international Aniridia Day and come together virtually to support each other. We have fantastic speakers, plus time to ask questions and chat with people also affected by aniridia.

Anyone around the world is welcome to join on Zoom, for approximately 2 hours from:

  • 14:00 British Summer Time – BST
  • 13:00 Greenwich Meantime – UTC
  • 15:00 Central European Summer Time – CEST
  • 10:00 US Eastern Daylight Time – ESDT   

Agenda

  • Open discussion for all attendees
  • Dry Eye Disease and Aniridia
    Colin Parsloe will talk about the causes and treatments for the gritty sore sensation many feel in their eyes.
  • “But you don’t look blind?” Growing up with an invisible disability
    Charles Bloch will talk about challenges and successes at university and finding jobs with aniridia.
  • Annual General Meeting 2020 of Aniridia Network
    Reports, financial accounts, questions and comments.
  • Achievements with aniridia
    Sinead Kane will give a motivating talk about becoming a lawyer, multi-marathon athlete and world record holder – with aniridia.  
  • Success at Aniridia Centre  
    Dr Natella Sukhanovain will show how she has created an effective centre of excellence at the Research Institute of Paediatrics in the Central Clinical Hospital of the Russian Academy of Science. 
  • Open conversation for all attendees

Don’t miss it. You can only take part if, in advance you:

Register to attend.

We will then send you an email with the web address to use a few days before the event.  

If you have any questions or difficulty registering contact us at info@aniridia.org.uk for help.

We make no promises about publishing recordings afterwards – so tune in live to take part!

Tweet about this event using: @AniridiaNetUK@AniridiaDay #ANUKconf.

These webinars are organised by Aniridia Network in the United Kingdom but are open to all with the exception of the Annual General Meeting (AGM). Anyone can watch this session, but only UK and Irish members of Aniridia Network can speak.

#AniridiaAids

What visual aids do you use and why, because of anirida? Mark Aniridia Day on 21 June 2020 with pictures/videos along with text on social media to explain what is needed to get things done. Use #AniridiaAid and tag @AniridiaDay to get maximum views.

Baseball cap, sunglasses, monocular, high visibility keyboard, signature guide, magnifying glasses, Amazon Echo

Aniridia affects people in different ways. We want to help everyone understand the accessories, gadgets, technology, people and animals that enable us to do all the wonderful the things we Can Do With Aniridia.

Explain to your friends and followers, the difficulties you (or your children) have, then the difference your aids make to life. Give others with aniridia new ideas for aids that could help them be a Shining Success.

Eleanor with her guide dog and Aniridia Day leaflets

On Facebook, Twitter or Instagram, tell the world about your #AniridiaAids such as:

  • Hats and sunglasses
  • monocular
  • screen readers/magnifier/high contrast software
  • assistant or relative
  • guide dog

Always mention @AniridiaDay and use the hashtag #AniridiaAids

On Facebook: join and post in the public Aniridia Day group first then share it on your newsfeed, so that the aniridia community as well as your friends get to see, Like and comment on it.

Check out the #AniridiaAids others have posted

Also use our online shop, social media badges and posters to help celebrate.

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 2020.

Tell us what you are planning/have done and we can help promote it.

#CanDoWithAniridia campaign

For Aniridia Day 2019 we focused on ‘possibilities’ to improve understanding of aniridia and social inclusion.

We asked people to put on social media a photo/video with an explanation that shows what can be done as a job, hobby, sport or education – while living with aniridia. The hashtag was #CanDoWithAniridia

Here is a selection of videos from the day.

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

Participation survey results for Aniridia Day 2018

Group photo of three adults and three children holding Aniridia Day posters

We ran a quick online survey about participation in Aniridia Day 2018.

25 people responded, 11 of them from the United Kingdom.

Here are the results.

  • 88% read social media posts
  • about half posted on social media as part of the #AniridiaSight campaign or more generally about aniridia
  • less than half listened to webinars. Most of these listened to just 1, but some up to 5
  • 6 people rated the day negatively and 18 positively. 8 gave it maximum positive rating

People said they liked:

  • sharing: knowledge/stories/experiences/accomplishments/struggles
  • sense of: togetherness, unity, not being alone, positivity, ‘awesomeness of our rareness’
  • getting practical information such as contact details, research news and treatments
  • raising awareness

One person said:

“It was a special day, because so many people like me came together and chatted on an online. Everyone seemed so confident and it was clear they had high goals and resilience. Everyone was collectively spreading awareness of aniridia and fighting for their rights, such as research, less stigma, independence and equality.”

Things that could have been better included

  • earlier notice and instructions for organising activities and contacting members and doctors
  • better publicity of webinars and clearer instructions on how to join in on different devices, including and the need to register or not
  • clashes with other small charities special days
  • some with no sight felt excluded from #AniridiaSight campaign

For the next Aniridia Day people want:

  • more opportunities to meet other people locally
  • more, shorter webinars mainly by doctors
  • fundraising activities
Regarding the first request: there is no way for us to arrange meetings centrally. They are entirely down to you to organise. It is very simple: you just choose a suitable time and place and perhaps a fun activity too. We can then help you publicise the event. But if you want more meet ups you must make them happen yourselves.
Overall It is clear that we are doing the right activities. However we need to do better at getting more people to take part, especially in non-English speaking countries. This requires more volunteers and engagement by the associations in those countries
Thanks to everyone for answering the questions.
Together we can make Aniridia Day even better next time!

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.

 

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?

#AniridiaSight campaign

Two views of people on a beach. One very over exposed to demonstrate effect of aniridia

On Aniridia Day 2018 we asked you to post a description of what you can see on social media, alongside a photo of the scene. This was to help try to answer the question

“What do you see with aniridia?” –

It is very difficult to answer without ever experiencing the acuity of normal sight and so being unable to compare the two. It is hard to imagine being able to see better that you ever have. Plus there is a lot of variation between people so there is not a single answer.

But it was really interesting to understand the range and how we talk about it, to be able to ‘see the difference’ and get some idea of how we all experience the world differently.

We asked people with aniridia to:

  1. Take a photograph (or video).
    Ideally include a Aniridia Day poster too.
  2. Write (or record) a description of what they can see from the same position.
  3. Share the picture and words publicly on social media (Twitter, Facebook, Instagram) so people can see the difference between the two.
    Include #AniridiaSight and @AniridiaDay in the post.  
    • On Facebook, we asked them to post first in our public Aniridia Day Facebook group to be seen by the maximum number of people, and then share it back to their own timeline for their friends.
  4. @Mention someone they know with aniridia to nominate them to do the same.

Parents could also help their children with aniridia to take part too.

We may well collate the posts for use elsewhere in future – with the author’s permission of course.