The Annual General Meeting (AGM) of Aniridia Network, a charitable incorporated organisation, was held online on Saturday 1 November at 2.40pm to transact the business below, in accordance with our governing document.

It was a session of Conference 2025, between interesting online seminars by patients and professionals.

Agenda

1. Minutes of Annual General Meeting 2024 (see also video below)
2. Matters arising
3. Reports & Accounts – To receive and consider the:
   • Annual Report of Aniridia Network for the year ended 2024-25
   • Independently examined financial accounts of Aniridia Network for the year 2024-25
4. Announcement of the results of the online vote to re-appoint Andy Baghurst as a charity trustee until the 3^rd AGM after this one, subject to the compulsory retirement of 1/3 of trustees by rotation at each AGM as described in the charity’s governing document.
5. Any other business

Transcript

[James] Right, we are going to move on now to the formal part of proceedings. This is our annual general meeting of the charity Aniridia Network. And so I’m going to hand over to Andy to run this section.

[Andy] Thank you. Hello, good afternoon, everybody. So as James said, it’s the AGM now.

So the first thing that we need to do is approve the minutes of the last meeting. So these have been available on our website for a while, and were linked to in the notice of the meeting. And they’ve also been circulated in email newsletters and on social media.

If anyone has any comments on them, please raise them now. But if we don’t have any comments, we’ll take them as approved. So we’ll just give it a few seconds. And if no one starts to talk, we’ll take them as approved and then move on.

So I don’t think we’ve got any comments. So these are the key points that I want to draw attention to this year. So the annual report and accounts covers the period from 1st of April 2024 to 31st of March 2025.

We’re really grateful that two people in the year fundraised for us, and that somebody also has told us they will remember us by providing a legacy donation.

A number of events took place during the year, including the equivalent conference in July 2024. But we also hosted several in person meetups too.

During the year we moved our social media from Twitter/X to Threads and Blue Sky.

Membership of the charity has remained broadly steady, but we do struggle with a low number of volunteers. So if you do have any capacity to volunteer, no matter how much time you have, we’d be very grateful.

During the year, we also appointed some new medical advisors and developed our safeguarding policy and practices, not least so we stand ready to participate in future research, which researchers typically require from us.

We’ll start going through some of the detail. So during the year, we received three medical queries which covered a recommendation for an ophthalmologist in a specific place, a query about a link between an aniridia and another medical condition and a cataract operation on a toddler.

Our disability rights advisor didn’t receive any queries or requests for support, so just remember that that service is available should you require any advice.

In terms of befriending, we remain very grateful to Lyn for facilitating this for us. Six new buddy relationships were set up, four of which were for members with a newborn or child. Parent information packs were also sent to new members with children.

During the year, we received eight requests for education advice, with information sent including pupil passports and education health care plan resources, and one contact was from a school Senco.

So the conference, kindly organised by Tierney, was held online in July 2024, with recordings and transcriptions published online. There were a number of talks, including on how to support children with aniridia in education, as well as a talk on the development of eye drops to treat aniridia associated keratopathy.

Feedback from the conference was really positive, and so we are really grateful for that feedback, but also that people find it helpful.

So on Rare Disease Day, we held a number of meetups. So there were four cities, that hosted them, with eight members joining. And again, we got positive feedback.

So the seventh European Aniridia Conference took place during the year, with James and Katie going to the two day event in Stockholm, growing their knowledge and connecting with peers and professionals.

At the European Aniridia conference as well, the first leadership Academy took place and that was aimed at boosting young people’s confidence and creating future leaders for aniridia associations across Europe. We sponsored and supported Haya to take part, and she talked about it at last year’s online conference.

So we’ll now spend a couple of minutes talking about Aniridia Network’s finances. So our annual accounts, which I’ll talk through now, have been reviewed by and passed by an independent examiner.

As you may be able to see on screen, our bank balance grew over the year. So at year end, we had cash funds of just more than £57,000. We saw a significant uplift in donations during the year, and controlled costs by hosting the conference virtually. In the year, we spent about £2,500 and received income of just more than £11,000.

So on the screen now is a graph showing our expenditure for the year. So our biggest item of expenditure was grants to attend the European Aniridia Conference, followed by fundraising costs, which paid off as we saw the increase in donations. But the next biggest costs are running the website, as well as the independent examination of our accounts.

So this slide now covers income. So income for the year, as I mentioned, was just more than £11,000. Almost half of that came by JustGiving, with about 30% coming through CAF.

So a big thank you to everybody who donated and supported us through the year, we’re really very grateful. We don’t typically get funding from government or anything like that, so donations are important to enable us to do the things that we do.

Given our cash balance, we put some of the money in a high interest account, and earned more than £1,500 in interest.

So we’ll now move on to members and supporters. So we had 20 new or renewed members during the year, with members now just over 500, of which 161 are junior members. We also have the support of more than 230 people.

One of the challenges we do have is that when children become adults, we need them to re-register in their own right, which some aren’t doing, and we’re therefore considering a youth membership category to ease that transition.

As I mentioned earlier, we moved away from Twitter, or X as it’s now known I think. So please do follow us on our new channels. If you’d be interested in creating content for them, please do get in touch, as we would really value some help there.

Moving on, we’d particularly like to highlight a number of fantastic fundraisers over the year. So Gemma’s 3 Peaks challenge raised £735 and Jack’s marathon raised £3,080. Thanks very much to them and their sponsors. If you would like to fundraise through doing events, please do. And if you need some support from us, please do get in touch.

So our volunteer of the year is Tierney for arranging our online conference last year, including arranging the speakers, which is no mean feat. So a big thank you to Tierney for that.

We also want to say thank you to a number of other people who volunteered in different ways during the year. So those include Rachel, Simon, Glen, Lyn and Clive.

So again, as I mentioned earlier, we’ve appointed two new expert medical advisors in Professor Moosajee and Mr Brookes, who have both kindly joined us today. They are both consultant ophthalmologists at Moorfields Eye Hospital in London. If you do have any queries for them, do feel free to reach out to us and we can help facilitate that.

So I mentioned earlier that we have a low number of volunteers, notwithstanding the support that we did get. If you are interested in donating your time, we’d love to hear from you, no matter how much time you can give us. We could do with another trustee and volunteers to help with a wide range of things from member administration to communications and fundraising.

So that’s it from me. Unless there are any questions, I will hand back over to James.

[James] Yeah, are there any questions about what we’ve been up to in the last financial year or anything about the future for that matter?

[Anita] I just want to say thank you for all that you have done. It sounds as if you’ve been working really hard and amazing and very much appreciated.

[James] Ah, thank you. That’s very nice of you to say so. Cool, if there’s nothing else in the chat?

Okay, so yes, the last section here is the election. We have a rolling process, whereby every year we look to elect or re-elect our trustees, to make sure that you the members have a say in who’s leading the organisation.

And this year, it was Andy’s turn to be up for re-election, and he’s thankfully chosen to re-stand because he is our treasurer. So he keeps all our finances in order.

And so over the past one to two months, there has been an online election running, which many of you have taken part in, so thank you very much for that.

And I am pleased to say that using the online voting platform choice voting, that Andy received 32 votes in favour and zero, essentially, votes against for re-open nominations. So that’s excellent.

Andy’s actually done better than Katie and I previously, where we did get a couple of re-open nomination votes. So well done Andy, and congratulations and thank you.

[Andy] Thank you everybody.

[James] That was out of 434 voters though, so that’s just over 7% of you, the electorate. That’s also roughly, as you saw, the number of people with aniridia and parents with aniridia are the electorate there. So if anyone’s got ideas for increasing that number of participants, that would be good to hear. Perhaps we’ve got some more stuff to learn from from Elliott there in terms of profile and power and so on.

Right, next thing is a slightly last minute insertion. If I can hand over to Katie to talk a little bit about the European Aniridia Leadership and Collaboration Academy.

[Katie] Thanks James. So this is an exciting opportunity for some of you to participate in this Leadership and Collaboration Academy, which is taking place in Sofia in Bulgaria, the 17th to 19th of April 2026. So it’s taking place alongside the eighth European Aniridia Conference. And we’re looking for participants.

If you are a young person, which is quite a broad definition of young, so 18 to 40, who’s looking to build their self confidence, their interpersonal skills, their ability to organise people and projects, as well as building your aniridia knowledge through participating in practical workshops, and hearing from inspiring leaders who will guide you through developing ideas, which will benefit you and the aniridia community, and help you to build connections with a range of professionals from around the world, many of whom have Aniridia.

If that sounds exciting, that’s something you’d want to participation in, as I say we’re looking for people between the ages of 18 and 40, who have any sort of connection with aniridia. So it could be having aniridia yourself, but it could be being a parent of a child with aniridia, it could have be a sibling or a friend who has aniridia, or just a professional interest through your profession.

If this interests you and you’d like to take part, we will be funding people from the UK who would like to participate. So we really encourage you to get in touch if this sounds like something that’s exciting to you.

If you were interested in developing your own skills, helping other people, and you want to contribute to the success of Aniridia Network or Aniridia Europe, please get in touch with us.

And look out for more information, it will be coming soon. So yeah, make sure that you’re getting our email newsletters and following us on social media, etc.

[James] Yeah, brilliant. So yes, if you fancy coming along with us, Katie and myself will be going to Sofia in Bulgaria in April. So if you’d like to come along with us, it is a brilliant experience going to the European Aniridia Conference.

There are lots of people with aniridia there from all over the continent, and many clinicians and scientists, so people like Mariya Moosajee, who we mentioned earlier, is often there for example, and many others like them.

And yeah, it was brilliant when we did this Leadership Academy one and a half years ago, myself, Katie and several other people spoke at that. And again, it was a really good opportunity to meet with the young people there and to get them involved and understanding more about the community and so on.

So yeah, if this interests you at all, please do get in touch. Use our usual contact address, so info@aniridia.org.uk, for example. If you prefer to use Facebook or whatever, that’s fine as well.

So we’ll put out more information, we more just wanted to take this opportunity to advertise it. The exact application process hasn’t exactly been decided yet. But we wanted to make you aware of this now. So if you get in touch, you will actually almost help shape what that application process is. So this is an opportunity in and of itself to get involved.

So yeah, please do speak to your relatives and so on, if this sounds like something they would like to get involved with, through you.