# **Annual Report 2024/2025**
1 April - 31 March
Web: **aniridia.org.uk** Email: **info@aniridia.org.uk**
## **@AniridiaNetUK AniridiaNetworkUK**
Aniridia Network is registered charity 1176792 in England & Wales, operating as Aniridia Network UK, 22 Cornish House Adelaide Lane Sheffield S3 8BJ
## **Key points**
- After a year with none, 2 people did fundraising plus a legacy donation
- Several useful events: meetups, conference and leadership academy
- Moved from Twitter/X to Threads and BlueSky
- • Membership numbers steady
- • Very low amount of volunteering
- Appointed new Medical Advisors
- • Developing safeguarding policy and practices
## **Contents**
# • Services & Information
- Conferences and Events
- Finance & Funding
- • Communications & Membership
- • Volunteering & Development
- • Governance
Aniridia
Network
Services & Information
## **Enquiries & Information**
- 3 medical enquiries on a variety of topics including:
- Recommendation for an ophthalmologist in
- a specific city
- Asking if there are any known links between
- aniridia and another medical condition
- Cataract operation on toddler via Instagram
## **Befriending**
- 4 members with a child offered a buddy
- 6 new adults offered buddy, or would like to be a buddy
- 6 buddy relationships set up in total.
- No requests relating to newborns
## **Education**
- 8 education advice requests. Information sent included:
- Pupil Passport resource
- ▪ Appendix 1 for completing EHCP
- ▪ Link to RNIB Early Years resources
- ▪ Auditory Processing Disorder
- ▪ Early years Development Matters link
- ▪ Links to local Parent Partnership/ SEND Information & Support Service
- 1 contact from school SENCO
Aniridia
Network
Conferences & Events
## **Conference 2024**
I had never met anyone else with aniridia. I wondered how I would feel. But someone said to me how pleased they were to meet me, as someone with aniridia! It was the opposite way round to what I thought would happen - a moment I will never forget.
- Held online on 27 July
- Recordings published on YouTube and on our website with a transcript
- • Thank you Tierney for wrangling speakers and hosting the event so well.
- • Presentation subjects:
- Supporting children with aniridia in education
- ▪ Impact of sight loss between adults with sporadic and familial aniridia.
- ▪ Developing eyedrops to treat aniridia-associated keratopathy
- ▪ Retinal detachments in aniridia research at Moorfields
- ▪ 3D corneal organoids for disease modelling and limbal stem cell deficiency cell therapy I felt included, informed and more hopeful for my
- research
I felt included, informed and more hopeful for my daughter
## **Aniridia Day 2024**
We made posts online and boosted posts by others
## Rare Disease Day 2024
8 members came to 4 meet ups:
I can’t explain in words how valuable I have found speaking with other families with aniridia so thank you both for making this possible for us. Helen
• Birmingham • Cambridge • London • Reading Big thanks to the hosts,
It was lovely meeting up, can’t wait do it again. Annie
## **7th European Aniridia Conference**
- Trustees James and Katie went to the 2 day event in Stockholm.
- They grew their knowledge
- and made new contacts with peers and professionals
- We covered their expenses
## **European Aniridia Leadership Academy**
This initiative aimed to boost young people's’ confidence and create future leaders of aniridia associations.
- We advertised the opportunity to take part
- We sponsored member Haya to attend
- Katie and James both delivered sessions
- Haya spoke about her experience at our 2024 Conference
- We advocate for the academy to
**----- Start of picture text -----**
I loved talking about my
journey to being a leader,
I hope I inspired them.
James
**----- End of picture text -----**
Aniridia
Network
Finance & Funding
## **Finances 2024/25**
Funds start of year: Funds end of year:
£49,142 £57,668
Expenditure: £ 2,564 Income: £11,090
Compared to the previous year, we saw a significant uplift in donations with a reduction in costs primarily due to hosting the conference online.
## **Expenditure 2024/25**
|Bank fees|£6.24|
|---|---|
|EAC grants|£663.48|
|Election fees|£169.20|
|Fundraising costs|£460.00|
|Independent examination fees|£360.00|
|Insurance|£96.00|
|Internal services - IT|£258.29|
|Membership fees|£50.00|
|Trustee expenses|£173.18|
|Website fees|£326.97|
## **Income 2024/25**
|Bank interest|£1,561.92|
|---|---|
|CAF Donate|£3,133.07|
|Give As You Live|£92.35|
|Justgiving|£5,440.69|
|Paypal Giving Fund|£466.01|
|Donation - Other|£396.09|
## **Accounts 2024/25**
Income was generated from direct debits and other donations - thank you! Savings account interest: more than £1,500.
Aniridia
Network
Communications & Membership
## **Members and Supporters**
# 17 adults and 3 children joined or renewed as members. Our contacts breakdown into 3 categories:
- 161 Junior Members
- • 502 Members
- • 238 Supporters
Recruited a member from Gibraltar
We are losing members as children become adults but do not join in their own right.
We are considering establishing a Youth Member category to ease this transition
## **Contact’s aniridia statistics**
|**Category**|**People**|**Increase since 2024**|**Increase since 2024**|
|---|---|---|---|
|Familial aniridia|200|1|0.5%|
|Sporadic aniridia|196|2|1.0%|
|Aniridia but origin unknown|79|-1|-1.3%|
|**Total with aniridia**|475|2|0.4%|
|**Traumatic aniridia**|3|0|0%|
|**WAGR**|45|1|2.3%|
|**None/unknown**|440|0|0%|
|**Total**|963|3|0.2%|
## **Website**
# • 8148 page views (up 16%)
- 4920 visitors (up 10%)
• 19 blog posts (down 14%) A post for each session of Conference 2024 with video and transcript
## **Email newsletter**
3 campaigns with re-mails to non-openers
- Autumn newsletter
- Conference promotion
▪ Invitations to meets ups
- 3,225 emails sent
- 2,858 opened
- 163 clicks
A 27% fall in engagement
## **Threads**
# • Posted all our news and events here instead of X/Twitter
- 86 followers (+16)
• Posts are also available to the metaverse for wider reach Full analytics unavailable until we have 100+ followers
## **Bluesky**
We set up an account on this other Twitter alternative. In 6 months:
- 15 followers
# • 4 following
- 28 posts
## **Instagram**
- 523 followers (up 26 5.2%)
- 15 posts (-20) mainly about
▪ events
- elections
- Aniridia Day
- Following 36 organisations & individuals
## **Facebook**
## 1276 followers
- +26 2.1% since 2024
We post on our own page and engage with the Aniridic Family group.
With our 3 main channels now all all owned by Meta we can use Buffer to post efficiently to them and schedule when useful too.
## **Youtube**
• Published 9 recordings with captions of our Conference sessions
- 348 subscribers (up 35 11%)
- 3,162 views
- 166 hours watched
- Top videos
- Auditory processing disorder
- ▪ Aniridia therapy and surgery
Aniridia
Network
Volunteering & Development
## **Donations**
We raise funds online and through regular donations. Thank you very much to everyone who has given in any way.
- One-off donations
- Facebook fundraisers for special events
- Several generous regular donors
- • A legacy from Miriam Ibberson of £150
## **Fundraisers**
People have done great feats in aid of our charity.
# • Gemma’s National 3 Peaks Challenge raised £735
- Jack’s Clarendon Marathon run raised £3,080
Thank you very much to all of them and everyone who sponsored them.
## **Volunteers thanks**
Thank you to all our volunteers for their stirling efforts this year:
- Tierney McGuire
- Rachel Campling
- Simon Iskander
- Glen Turner
- Lyn Buller
- Clive Matthews
Several of our past helpers have not been able to resume volunteering for various reasons.
## **Volunteer of the year**
Tierney McGuire for wrangling speakers and hosting our conference in 2024.
## **Medical Advisers**
# We appointed new experts to respond to medical enquiries from members:
- Mr John Brookes
• Professor Mariya Moosajee Both are consultant ophthalmic surgeons at Moorfields Eye Hospital
## **Volunteers needed**
- More volunteers are badly needed especially people with skills in:
- finance
- fundraising
- volunteer management
- human resources and policy
- business development
- membership administration
- communications
Aniridia
Network
Governance
## **Safeguarding**
We have been working with a consultant to develop a safeguarding policy and code of conduct. This will make being part of Aniridia Network safer for everyone, especially children and vulnerable adults.
## **Trustee board**
We would like to thank our trustees for their work over the year:
- Katie Atkinson
- James Buller
- Andy Baghurst
We are trying to make arrangements to recruit new trustees, including external adverts and an information pack.
## **Management roles**
# • Head of Communications & Membership
- James Buller
- Head of Services & Information
- Katie Atkinson
# • Head of Finances & Fundraising Andy Baghurst
## **2024 AGM Voting**
The vote was held online using Choice Voting, Participation was again sadly very low, despite promotion James Buller 28 Re-open nominations 1 Turnout: ~6.75%
## **Aniridia Network** (Registered charity, number 1176792) **Financial statements for the year ended 31 March 2025**
|**Page**|**Contents**|
|---|---|
|2 - 4|Trustees’ annual report|
|5|Independent examiner’s report|
|6|Receipts & payments account|
|7|Statement of assets & liabilities|
|8|Notes to the accounts|
## **Aniridia Network Trustees’ annual report for the year ended 31 March 2025**
**Full name** Aniridia Network
**Organisation type** Charitable incorporated organisation
## **Registered charity number** 1176792
**Principal address** 22 Cornish House, Adelaide Lane, Sheffield, S3 8BJ
## **Trustees (held office throughout year unless noted otherwise)**
Katie Atkinson, Chair James Buller, Trustee Andrew Baghurst, Trustee
## **Independent examiner**
Eva Stevens, employee of Community Accounting Plus, Units 1 & 2 North West, 41 Talbot Street, Nottingham, NG1 5GL
## **Governance and management**
The charity is operated under the rules of its governing document adopted 23/01/2018.
Trustees are recruited via adverts on the Aniridia Network’s communications channels to members and followers. Trustees are appointed by members at Annual General Meetings or, on an interim basis, co-opted by the existing trustees (in accordance with the charity’s governing document).
## **Objectives and activities**
The objects of the CIO are, for the public benefit, in the British Isles:
(1) the protection and advancement of health, of people with aniridia, in particular but not exclusively by:
(a) promoting and facilitating research into the causes, effects and treatments of aniridia
(b) providing information to educate people with aniridia, their family members and relevant professionals about the causes, effects, treatments and management of aniridia.
2
## **Aniridia Network**
(2) the relief of people suffering from aniridia and their families, in particular but not exclusively by:
(a) providing a network of families, individuals and professionals in order to share: ideas, knowledge and experiences plus give practical and emotional support
(b) providing information and services to people with aniridia, their family members and relevant professionals regarding education, health, employment and social security plus life skills relevant to having aniridia.
(3) the education of the public, in all areas relating to aniridia by:
(a) publicising the needs, stories and achievements of people affected by and working with aniridia
For the purpose of this clause ‘aniridia’ means the genetic conditions causing iris defects (such as aniridia and iris hypoplasia) usually causing visual impairment. Where they occur in people with aniridia it also encompasses related conditions such as: dry eye, keratopathy, nystagmus, cataracts, glaucoma, auditory processing disorder and WAGR.
## **Summary of the main activities undertaken for the public benefit**
Aniridia Network supports people in the UK affected by aniridia: those who have it plus their family, carers, doctors, educators and others. The charity wants all these people to be hopeful, confident, supported and well informed regarding aniridia. For them we: organise conferences, meetups and befriending, provide access to professionals and distribute or signpost to useful information.
## **Public benefit statement**
The Trustees confirm that they have complied with the duty in section 17 of the Charities Act 2011 to have due regard to the Charity Commission's general guidance on public benefit, 'Charities and Public Benefit'.
## **Summary of the main achievements during the period**
Enquiries – 3 medical enquiries on a variety of topics.
Befriending – 4 new members referred to service and offered a buddy, with 8 new adults being offered a buddy or offering to be a buddy. Parent information packs sent to all new members with children. 6 buddy relationships set up in total.
Education – 8 requests for education advice. Information sent out included: pupil passports, EHCP Appendix 1 resource, and links to RNIB Early Years resources and support for parents. 1 contact from a school SENCO.
3
## **Aniridia Network**
Conference – online conference held on 27 July 2024, with recordings published on Youtube and on the website with a transcript available. The conference covered various topics include supporting children with aniridia in education, the impact of sight loss between adults with sporadic and familial aniridia, developing eyedrops to treat aniridia-associated keratopathy and retinal detachments in aniridia research at Moorfields Eye Hospital.
Events – various social events were arranged, including several national Rare Disease Day events. Two Trustees represented the Network at the 7[th] European Aniridia Conference, and one member was supported financially to attend the European Aniridia Leadership Academy.
## **The charity’s policy on reserves**
The charity has no specific policy with regard to the level of reserves.
Signed on behalf of the charity’s trustees:
Signed
Date 11/10/2025
Andrew Baghurst, Trustee
4
## **Independent examiner’s report to the trustees of Aniridia Network for the year ended 31 March 2025**
I report to the trustees on my examination of the accounts of Aniridia Network (the charity) for the year ended 31 March 2025.
## **Responsibilities and basis of report**
As the trustees of the charity you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’). I report in respect of my examination of the charity’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
## **Independent examiner’s statement**
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
1. accounting records were not kept in respect of the charity as required by section 130 of the Act; or
2. the accounts do not accord with those records.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
Signed __ ________ Date __03/11/2025_______________ Eva Stevens BSc, CPFA Employee of Community Accounting Plus
5
## **Aniridia Network Receipts & payments account for the year ended 31 March 2025**
|_2024_
Total
**Unrestricted**
Funds
**Funds**
£
**Note**
**£**
**Receipts**
3247
Grants & donations
**2**
9528
1013
Conference attendance
-
105
Bank interest
1562
-
Exchange rate gain/(loss)
-
3183
**Total receipts**
**11090**
**Payments**
5245
Events/Conference
-
-
European Aniridia Conference grants
664
-
Fundraising costs
460
310
Internal services - IT
258
77
Membership fees
50
438
Independent examination fees
360
96
Insurance
96
583
Printing and postage
-
290
Trustee expenses
173
201
Election Fees
169
52
Bank Fees
6
326
Website Fees
327
17
Volunteer awards
-
7635
**Total payments**
**2564**
(3270)
**Net receipts/(payments)**
8526
52412
Cash funds at start of this period
49142
49142
**Cash funds at end of this period**
**57668**|**Restricted**
**Funds**
**£**
-
-
-
-
**-**
-
-
-
-
-
-
-
-
-
-
-
-
-
**-**
-
-
**-**|**_2025_**
**Total**
**Funds**
**£**
9528
-
1562
-|
|---|---|---|
|||**11090**|
|||-
664
460
258
50
360
96
-
173
169
6
327
-|
|||**2564**|
|||8526
49142|
|||**57668**|
6
## **Aniridia Network Statement of assets and liabilities at 31 March 2025**
|**Aniridia Network**
**Statement of assets and liabilities**
**at 31 March 2025**||
|---|---|
|_2024_
£
**Cash assets**
49142
Bank accounts
49142
**Assets retained for the charity’s own use**
414
General equipment
**Liabilities**
(360)
Creditors - Independent examination fee
(360)|**_2025_**
**£**
57668|
||**57668**|
||414
(372)|
||
**(372)**|
These financial statements are accepted on behalf of the charity by:
Signed Date 11/10/2025 Andrew Baghurst, Trustee
7
## **Aniridia Network Notes to the accounts for the year ended 31 March 2025**
## **1. Receipts & payments accounts**
Receipts and payments accounts contain a summary of money received and money spent during the period and a list of assets and liabilities at the end of the period. Usually, cash received and cash spent will include transactions through bank accounts and cash in hand.
## **2. Grants & donations**
|CAF Donate
Cafess
Give As You Live
Justgiving
Paypal Giving Fund
Other|**Unrestricted**
**£**
3133
-
92
5441
466
396
**9528**|**Restricted**
**£**
-
-
-
-
-
-
**-**|**Total**
**£**
3133
-
92
5441
466
396|
|---|---|---|---|
||||**9528**|
## **3. Premises & staff**
The Aniridia Network has no staff employed and no premises.
## **4. Trustees’ remuneration**
- Trustees received no expenses, remuneration or benefits in this period.
## **5. Related party transactions**
- There were no related party transactions in this period.
## **6. Glossary of terms**
**Creditors:** These are amounts owed by the charity, but not paid during the accounting period.
8