Not long until Aniridia Day 2019!
We are sharing with you our promotional video.
Join us in participating in the Aniridia Day campaign!
Play the hand you are dealt!
For this year’s Aniridia Day, we want you to focus on possibilities to:
- improve understanding of aniridia and social inclusion
- support people (with children) with aniridia
- raise funds for the European Aniridia Conference 2020 in the UK
- empower national aniridia associations
Check what your local aniridia association is planning but here are the basic ideas.
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
Gathering 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
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.
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.
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.
Here’s a video about the day
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
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 was a global educational event. Thank you to everyone who took part and made it happen.
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
Social media activity
“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.”
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 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.
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.
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?
We would love to see photos of you celebrating Aniridia Day, wherever you are in the world. And we’re looking forward to people sharing their Aniridia Sight photos too.
We’ve produced a couple of posters that you can print off and use in your photos, to show that you’re supporting Aniridia Day. You can hold them up in front of you or put them on the wall, for example.
How far around the world can we spread the Aniridia Day logo? How many people can we get holding it up? Take your photos and share them with us on 21 June!
The first poster has “Supporting Aniridia Day” at the top, above the logo in the centre. At the bottom is our website and social media details.
The logo shows a cartoon image of the Earth, wearing sunglasses, smiling and giving 2 thumbs up.
The second poster is very similar, but has an extra space at the top to write your activity or location. We’ve included a Word version with a box that you can type into at the top.
So you could tell us about a special event that you’re doing, or let us know what city or country you’re in. We’d really like to see how and where you’re enjoying the day!
Last year in the promotional video for our Shining Success campaign, Lisa promised to start learning a French. She started this year. Last week she prepared a presentation about herself in called J’ai une Aniridie (I have aniridia). Brilliant!
- panel debate
- a person with aniridia hosting a ‘Ask me anything’ or demonstrating a screenreader
- an open chat for anyone affected by aniridia in Australia
- a talk and answers to questions by a aniridia doctor in Russian
- a semi-scripted conversation between two parents
- simultaneously watching of a YouTube video followed by questions/debate
An example of the first idea is James’s Facebook Live for Aniridia Day 2017.