sense of: togetherness, unity, not being alone, positivity, ‘awesomeness of our rareness’
getting practical information such as contact details, research news and treatments
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
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!
Informal gatherings took place to celebrate Aniridia Day 2018. They brought together people affected by aniridia to share experiences, stories and useful information.
Four adults and a baby all wearing sunglasses in park
5 people around a table in London Victoria holding up a Aniridia Network UK t-shirt
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.
‘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.
“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.”
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.
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 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.
Could you speak at an online event to celebrate the day and improve understanding of aniridia? Do you know a patient, parent or doctor who would?
Our plan this year is to hold several webinars about aniridia during the day, that people can watch or take part in wherever they live.
This could take various forms (perhaps followed by questions from the audience):
Another option is discussion on a subject that anyone can take part in. This would still need a someone to lead and manage the session.
The subjects could be narrowly or broadly defined. The target audience could also be small or large: any parents, patients, doctors, or people in a particular country or having a specific surgery related to aniridia.
You can choose the local time and language of the session.
Here are some ideas, but we want to you to invent your own too:
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
We plan you use either join.me or appear.in internet conferencing systems . You will just need a computer or a smartphone. If you have a webcam you could use it, or share your screen, or just use audio. We will send you instructions in advance.
We need people like you, all around the world to run these webinars
If you are interested in being a speaker/host write to firstname.lastname@example.org as soon as possible, what you want the subject and format and time (GMT) to be, so we can advertise it.