An Annual General Meeting (AGM) of Aniridia Network, a charitable incorporated organisation was held online on Saturday 27 July 2024 at around 4.15pm to transact the business below, in accordance with our governing document. It was a session of Conference 2024, in between fascinating online seminars by patients and professionals.

Minutes of the 2024 Aniridia Network Annual General Meeting.

Agenda

1. Minutes of Annual General Meeting 2023 agreed (see video below)
2. Matters arising
3. Reports & Accounts – To receive and consider the:
   • Annual Report of Aniridia Network for the year ended 2023-24
   • Independently examined financial accounts of Aniridia Network for the year 2022-23
4. Announcement of results of online vote to appoint James Buller 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 of the meeting

[Tierney] So the next part of this conference will be the Annual General Meeting.

So you’re going to get a little idea of what the charity has been up to over the past year. And also you’ll get to find out the results for the trustee election.

So I’m going to hand you over to one of our trustees, which is Andy Baghurst.

[Andy] Wonderful, thank you Tierney. And welcome everybody to the AGM section of the conference.

I’m Andy Baghurst, I’m one of the three trustees for Aniridia Network, and I’ll spend the next few minutes taking you through the Network’s business.

So the first thing that we need to do is look at last year’s minutes.

So they’ve been online since the second of September last year, and they’ve been publicised by email and on our social media.

So this is an opportunity now for anybody to raise if they have any comments or any questions on any of those minutes. Please do raise your hand or put something into the chat. If there isn’t anything, we can move on.

So I can’t see anything, so we’ll move on. We’ll take those as agreed.

So we’ll move on now to the annual report and accounts.

So some of the highlights of the last year include a really successful in-person conference in Birmingham that we held in September 2023.

We had almost 60 delegates there and we had at least 9 speakers. And we followed that up with a social evening, which was really well attended.

We’ve also helped arrange and host various social meet ups over the year, which are a great opportunity for people to meet and discuss life with aniridia, share tips and generally support each other.

Our befriending and education support services have also been well used over the last year and more so than the year before.

We distributed a large number of leaflets to 480 organisations from eye charities to ophthalmology clinics. And hopefully they’ll help us to find new members who we can then support.

Whilst there have been lots of positives over the year, we’ve also faced a number of challenges.

So one of those is converting child members to adult members. We have to ask people as they turn adults if they want to continue to be members, and not everybody is carrying on with us.

So if you are a parent of someone who has become an adult, and they’ve not become yet an adult member, please do encourage them to become one.

We’ve also had a number of fundraisers over the last year, and we’re very grateful for all that they’ve done for us. But we’d love more. So if you are willing to help fundraise, please do get in touch with us.

A number of people have helped us over the course of the last year, and I’ll give them a shout out in a few minutes. But we’d also love to have many, many more people helping us if we can.

If you think you can help in any way, even if it’s just for a small amount of time, please, please do get in touch with us, we’d really love to hear from you.

During the course of the 2023/2024 financial year, we very sadly lost one of our long serving medical advisors, Melanie Hingorani, due to retirement.

That was a really sad thing for us because she’s worked with us for very many years, and it was a shame to hear that. But we wish her all the best in retirement.

And for the first time, our expenses exceeded our income. And that’s primarily due to us holding the in-person conference last year.

So if we now move on to thinking about some of the things that we’ve done during the course of the year.

In the last financial year, we got 10 medical inquiries on a range of topics, from genetic testing to somebody asking how they could complain about the medical care that they had received.

Our befriending service, I mentioned a few moments ago, had been really well used.

The befriending service is run by Lyn Buller for us, and it continues to be a real source of encouragement, particularly, but not solely, for parents of children newly diagnosed with aniridia, with 12 buddy relationships set up in total over the course of the year.

And parent information is regularly sent to all new members with children.

Moving on to education.

So we’ve had lots of people reach out to us over the course of the last year, asking for help and advice around education, with information sent to them on a number of things from pupil passports to educational health care plan appendices, as well as the RNIB’s early years resources.

We continue to have access to Clive Matthews, who’s a professional educational adviser, and one case was sent to him during the course of the year.

If you do ever feel like you would benefit from any help around education, please, please do reach out to us, we’d love to be able to help you. And if we can’t, we’ll certainly point you in Clive’s direction.

And Lyn also conducted a survey for us on the level of support provided by local authorities, with 26 parents responding to that survey.

So conferences and events.

For the first time in 4 years, last year, due to Covid, we held an in-person conference.

We had a large number of attendees and speakers, including from our fantastic patrons. And the event was followed by a social evening, which was also really well attended.

The trustees and I would like to take this opportunity again to say thank you to everyone who attended and participated in the conference in one way or another.

On Aniridia Day 2023, we hosted a meet up in London for 7 people. This is talking about the event in 2023, because it’s during the 23/24 financial year. But we also hosted some events this year too, in 2024.

On Rare Disease Day, earlier in February, we arranged a number of meet ups in Birmingham, Cambridge, Reading and London, and they were also well attended with 18 people going along.

So finance and funding.

During the 2023/24 financial year, we spent just over £7,500 and got income of just over £4,300. So for the first time, our expenses exceeded our income.

That meant we had to dip into our reserves, which do remain healthy, but we obviously can’t do that every single year.

Just over two thirds of our costs were on last year’s in-person conference, where we spent just over £5,000, with the biggest element of that being on the conference venue.

Other significant costs in the year include printing and postage. I mentioned the leaflets that we’d circulated to the 480 different organisations.

And one of the other biggest costs is the independent examination of our accounts as well.

Income.

So during the year, we received some significant one-off donations in the year, as well as some regular donations.

We really are truly grateful to everyone who donates to us and would like to say a big, big thank you for them.

We’d also like to say thank you to the people who fundraise for us, and I’ll come on to that in a moment.

The other main source of income from in the year was from attendance at the conference, but at just less than £1,000, that income was less than 20% of the cost of the conference.

During the year, we set up a couple of savings accounts to take advantage of the interest that we can earn on the reserves that we have, and hopefully that will help offset some of the costs that we have.

We are pending the outcome of the independent examination of our accounts, but we don’t anticipate any concerns, because the accounts have been prepared on the same basis as they always are.

So communications and membership.

I’ve mentioned a couple of times, but leaflets were sent out to 480 different organisations. Each organisation received 7 leaflets.

We sent all of those leaflets out with a view to raising awareness of aniridia for each of those different organisations, but also with the hope to reach potential new members.

And we have had some success with that campaign, with some queries and requests for more leaflets coming our way.

Volunteering and development.

So I mentioned a few minutes ago that we’d had some fundraisers.

The three biggest ones of note were Zinovia’s school, where she regularly does something for Aniridia Day, asking people to go in wearing sunglasses.

Lyn has very kindly arranged some gardening events for us.

And Laura continues to walk 15,000 miles in 1,000 days to raise money for us, and that has raised almost £600. So thank you to her for that.

We’d be very grateful and would look to support anyone who wishes to fundraise for us. Please do reach out to us if we can help you in any way with that. We’d love to be able to do that.

I mentioned earlier that our long term medical adviser, Melanie Hingorani, had retired. On behalf of all patients and aniridics that she has helped, we’d like to say a massive thank you to Melanie and reward her with an Outstanding Contribution Award. Thank you Melanie.

We’ve also had a number of volunteers that have helped during the year – Simon Iskander, Rachel Campling, Glen Turner, Lyn Buller and Clive Matthews – and we’d like to say a big thank you to all of them.

Some of our helpers have stopped volunteering during the year for various reasons.

We are constantly looking out for people who can help us. There’s lots that we’d like to be able to do, but we simply can’t do it because we don’t have the people to do it.

Please, please do get in touch with us if you can offer time in any capacity, we would really love to hear from you.

It can be a great opportunity for you to broaden your skill base, get involved in different things that you wouldn’t ordinarily. So please do reach out to us if you can.

So the trustee election. Existing trustee James Buller stood for re-election.

We had 430 eligible voters, but a turnout of just under 7%. All but one person voted for James, resulting in him being re-elected, so congratulations to him.

That brings us to the end of the AGM. I’d really love to welcome any comments, any questions on that. Thank you.

[Tierney] Great. Thank you so much Andy.

I think it’s always interesting to hear what’s happened over the year, because I know things can get lost with everyone’s busy schedule, so it’s nice to hear it all in one go.

Do we have any questions from the audience for Andy or any of the trustees who are currently on the call?

[Andy] So it does look like we’ve had one.

So yes, absolutely, we’ll post it in the chat here, a link to become a member.

An important reminder that membership is free, we don’t charge for membership. But having your details is really helpful for us. We can get in touch with you, send you newsletters, etc. So we’ll post that link in the chat.

[Tierney] Brilliant. Well, I’m sure if there are any questions, people can pop them in the chat, or as always you can get in contact with the trustees of the Network in private if that’s what you’d prefer. But we’ll move on for now.