# **Aniridia Network Annual Report 2020/2021** 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 ## **Contents** # • Services & Information • Conferences and Events • Finance & Funding • Communications & Membership • Volunteering & Development • Governance ## **Impact of COVID-19 pandemic** - **On people affected by aniridia** - Not aware of any health effects relating specifically to aniridia - Visually impaired people experienced challenges such as with being guided and social distancing **On Aniridia Network** - Online instead of physical events - • Less activity to communicate - • No fundraising feats so lower income - • Lower expenditure on events and travel - • Deferment of retirement by rotation of trustees Aniridia Network Services & Information ## **Enquiries & Information** 7 medical enquiries on a variety of topics including: • Glaucoma medication • Genetic testing • Cataract surgery • General treatment options for aniridia 2 enquiries asking for advice on Personal Independence Payments (PIP) ## **Befriending** - 27 individuals/families made contact or were contacted when they became members. - 22 members with children were sent our Parent Information pack and offered buddy support. - 6 did not respond to initial emails on becoming members. - 7 requested a buddy and were successfully linked to other families, resulting in 18 buddy relationships. - Many make contact with each through Aniridic Family group on Facebook. ## **Education** - 16 requests for our aniridia Pupil Passports, - 3 from teachers for the visually impaired. - 2 referrals to Education Advisor Clive Matthews about Education Health Care Plans (EHCP) and local authority input. - People posting on Aniridic Family, are contacted if appropriate and offered further support - Information sent includes links to websites Early Years Support, and Department for Education documents. - Developing resource for parents to complete Appendix 1 in the assessment for Education Health Care Plans with examples from members who have previously gone through this process. ## **Gene.Vision** We contributed to the content of this new website by Moorfields Eye Hospital for both patients and doctors It contains in-depth, but easy to read, details about aniridia. Alongside is scientific content aimed at clinicians and other professionals who are diagnosing patients or learning about the condition. ## **Gene.Vision** Trustee James was a digital consultant for the project. He advised on development methods and checked the code for accessibility issues. He later took part in the trials. This led to helping to edit a - peer reviewed paper published in the Journal of Medical Internet Research. ## **Aniridia Europe** - Aniridia Network is a founding member of Aniridia Europe and Katie sits on its Board of Directors. - Aniridia Europe has been participating in three major projects during this year: - ERASMUS+ Project Looking Out For A School For All: early educational inclusion for students with low vision. This project was due for completion in 2020 but the final stage, disseminating the outcomes has been postponed to summer 2021. - COST ACTION: ANIRIDIA-NET: Aniridia networking to address an unmet medical, scientific and societal challenge - AAK-INSIGHT: ‘Aniridia – novel therapeutic tools to treat or prevent progressive corneal opacification’ It launched a series of webinars in 2021 to better connect with the wider aniridia community. Aniridia Network Conferences & Events ## **Conference 2020** An online event for connecting with and supporting each other, in spite of pandemic restrictions . An afternoon of free, informative presentations and discussions Around 70 attended including people from all over the world as part of Aniridia Day. - Recordings of the talks are on YouTube and included:: ● **Dry Eye Disease and Aniridia –** Colin Parsloe **“ ’ ”** - ● **But you don t look blind? –** Charles Bloch - ● **AGM 2020 of Aniridia Network** ● **Success at Aniridia Centre –** Dr Natella Sukhanova - ● **Achievements with Aniridia** – Sinead Kane - ● Open conversation for all attendees ## **Aniridia Day 2020 Campaign** We promoted sharing the #AniridiaAids we use. **Aniridia Day 2020 Competition** We promoted international art & video competitions. UK children were among the winners ## **European Aniridia Conference** - Granted €30,000 by Network Support Scheme ## Pandemic effects: - Postponed until summer 2021 - • Sponsorship seeking unsuccessful - • Uncertain social distancing and travel restrictions mean it will be online meaning budget agenda and interactions will be revised. Aniridia Network Finance & Funding ## **Finances 2020/21** Start of year: £45,400.20 End of year: £49,391.40 Expenditure: £1,402.44 Income: £5,393.64 ## **Expenditure** **----- Start of picture text -----**
Category Amount
Internal Services - IT £455.03
Website fees £315.78
Marketing £226.26
Insurance £185.00
Membership fees £107.10
EAC 2020 £102.00
Bank fees £11.27
Total £1,402.44
**----- End of picture text -----**
## **Income** |||| |---|---|---| |||| ||**Category**
**Amount**
Donation - CAF Donate
£2,665.84
Donation - Facebook
£962.13
Donations - PPGF
647.82
Donation - Other
£470.00
Donation - Justgiving
£347.18
Donation - Amazon
£136.75
Donation - Everyclick
£78.13
Donations - DSMAC
31.6
Donations - CafePress
30.68
Donation - DONR
£23.50|| ||**Category**|**Amount**| ||Donation - CAF Donate|£2,665.84| ||Donation - Facebook|£962.13| ||Donations - PPGF|647.82| ||Donation - Other|£470.00| ||Donation - Justgiving|£347.18| ||Donation - Amazon|£136.75| ||Donation - Everyclick|£78.13| ||Donations - DSMAC|31.6| ||Donations - CafePress|30.68| ||Donation - DONR|£23.50| **Total £5,393.63** ## **Notes** Income still generated from direct debits, donations, royalties and commissions. Overall costs remained low due to COVID-19 pandemic Independent examination CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Independent Examiner's Report R•port to th• tru8t••81 m•mbws of miridia Network On accowrts fof th• y•ar ended 31" Marth 2021 Chartty no Ilf any) 1176792 Passed l to thg truslgè$ on nTry ex8mination of tr* ac¢ounts of thg 8bove orty IYh& Trusl-l for the y08r ￿delI311031lozl. R•sponslbllltl•s and As chanty trusteos ol th& TrLSSt. you gre ￿SPonSible for the preparat￿n ba$1$ of rèport of thg accounts In accordarts th8 requirèments ol the Charities Act 2011 llh6 Acri I r•FrtM in r•spod of my ex8rninalion of Iho Tnjsl's aceounlg carried out under sedion 145 of the 2011 Act and in carrying oul my examinalion. I have I￿lOwert applicable Dir8ctKJns given by th8 Chanly CommissK)n under $8Ctth 145(5Mbl ol the Act. I have ¢¢ffi￿aled my 8x8mination. I conflm Ihsl no malerkgl mallers have coTh lo my aitention in conr￿CtIOn ￿th the examinalDn which glve5 me cause to bel￿e that in, any material respecl.. a¢￿untIng re￿rdS wer8 not kepl in accordan￿ ¥￿th socbon 130 of the Act the accounts do rK)l attord w+th the accountirwJ reoyds Ind8pond8nt examlnerfs statement I have no concems and have come acTOSS no other matters In connection vAth fv examinatK)n lo which attention should be drawn in order lo enable a prosxr urnJerntatvJitYJ of th& acctyJnls to bo rn8chet1. Slgn•d: Oat•: 2810712021 Mam•: Paul Haojan Kent Aniridia Network Communications & Membership ## **Membership/Supporter statistics** ||**Category**|||||**People**|**Increase since 2020**|**Increase since 2020**|• Rate of increase has|• Rate of increase has|• Rate of increase has| |---|---|---|---|---|---|---|---|---|---|---|---| ||**Familial aniridia**||192||||8|4.2%|slowed||| ||**Sporadic aniridia**||181||||7|3.9%|• New registrations are||| ||**Aniridia but origin**
**unknown**||84||||-3|-3.6%|usually families with||| ||**Total with aniridia**||457||||12|2.6%|newborn cases of||| ||**Traumatic aniridia**||2||||0|0%|aniridia.||| ||**WAGR**||45||||0|2.8%|• There are||an estimated| ||**None/unknown**||399||||11|2.8%|1400 people with||| ||**Total**||903||||23|2.5%|aniridia in||the UK.| ||||||||||So we know about a||| ||||||||||third of them||| ||||||||||||| ||||||||||||| ## **Website** - 11103 page views (down 6%) - 5626 visitors (down 10%) - 11 blog posts Top blog posts: - Gene.Vision website launch - Rhiannon’s Story ## **Email newsletter** - 4 mails sent - Improved accessibility - • Statistics for New Year 2021 newsletter: ## **Social media** - Monitored and promoted mentions of ‘aniridia’ - Promoted and engaged in Aniridic Family group on Facebook - Regular reminders about membership, fundraising and volunteering - Young Aniridics ‘takeover’ for Rare Disease Day 2021 ## **Twitter** 865 followers up 5% on 2020 20162017201820192020Year on year increase Site 17 18 19 20 21 2016-17 2017-18 2018-19 2019-20 2020-21 Facebook 779 850 951 1023 1063 74 10% 71 9% 101 11% 72 7% 40 4% Twitter 679 718 758 820 865 82 14% 39 6% 40 5% 62 8% 45 5% ## **Instagram** - 289 followers (up 117%) - 34 posts - • Following 23 organisations & individuals Focus of the Young Aniridics takeover for #RareReality campaign for #RareDiseaseDay ## **Youtube** # • Published 4 videos with captions - 187 subscribers (up 31) ## **Facebook** 1063 followers - +40 since 2020 [+ 4%] - • 79% aged 25-54 [+20%] - • 521 (49%) in UK [- 1%] - • 213 (20%) in USA [+ 1%] - 74% women 24% men ## **Collateral** We have printed: • business cards, some with braille • stall tablecloth • pop-up banners Aniridia Network Volunteering & Development ## **Donations and commissions** We raise funds online and through regular donations. Thank you very much to everyone who has given in any way. - Commissions include: - Give as You Live (£78) - Amazon Smile (£136) - Humble Bundle - Christmas Cards - Online shop - Several people generously continue to make regular donations and lump sums came from Veronica and Lyn & Peter - Due to the pandemic there were no feats and so no income from sponsorships **Volunteer induction** Aaron devised an online booklet to aid the onboarding of new volunteers ## **Volunteers thanks** Thank you to all our volunteers for their stirling efforts this year: - Aaron Lee - Clive Matthews - Emily Nash - Gavin Fox - Glen Turner - Keith Spink - Nikki Hall - Lyn Buller ## **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 ## **Deferment of trustee retirement** As there were no resolutions or new trustee nominations for the AGM 2020, the only other agenda item was to be a vote to reappoint Katie Atkinson as a trustee. It was her turn to 'retire' under a rotation system, despite serving only 2 years of a normal 3-year term. An in-person meeting was not possible due to the government restrictions to control the COVID-19. The trustees looked at the practicalities of holding an election by post and email. They concluded that a postal vote would be difficult to run efficiently, cheaply and fairly. They also considered the Charity Commission guidance on cancelling AGMs and the context of the currently 4 out of 5 filled trustee posts. As a compromise, the board decided to hold the meeting online but waive the requirement for Katie to retire this year. This avoids a vote but still puts the team up for scrutiny. We hope members will understand this choice, which was not made lightly. We welcome questions or comments about it. ## **Members & Supporters** We are taking steps to clarify the status of our contacts as supporters or voting members and enabling them to vote remotely in our next annual general meeting. ## **Trustee board** We would like to thank our trustees for their work over the year: # • Katie Atkinson • James Buller - Eleanor Burke - • Dave McKay - Additional people would be very welcome. ## **Management roles** - Head of Communications & Membership James Buller - Head of Services & Information Katie Atkinson # • Head of Conferences & Fundraising Dave McKay **Charity Name No (if any) Aniridia Network 2** **Receipts and payments accounts For the period** 1/4/2020 31/3/2021 **To from** ## **Section A Receipts and payments** **----- Start of picture text -----**
Unrestricted Restricted Endowment
Total funds
funds funds funds
to the nearest
to the nearest £ to the nearest £ to the nearest £
£
A1 Receipts
Donation - Amazon 137 - - 137
Donation - CAF Donate 2,666 2,666
Donation - Justgiving 347 - - 347
Donation - DD - - -
Donation - GAYL and EC 78 - - 78
Donation - DONR 24 - - 24
Donations - PPGF/CafePress/DSMAC 710 - - 710
Donation - Other 470 - - 470
Donation - Facebook 962 - - 962
HMRC Gift aid claim - - -
EAC 2020 - - -
Jun 19 Conf - - -
5,394 - - 5,394
Sub total (Gross income for AR)
A2 Asset and investment sales,
(see table).
- - - -
- - - -
Sub total [ - ] - - -
Total receipts 5,394 - - 5,394
**----- End of picture text -----**
CCXX R1 accounts (SS) 01/30/2022 1 **----- Start of picture text -----**
A3 Payments
Running costs 1,063 - - 1,063
Marketing 226 - - 226
Bank fees 11 - - 11
June 2019 Conf - - -
Trustee expenses - - -
EAC 2020 102 - - 102
- - -
- - -
Sub total 1,402 - - 1,402
A4 Asset and investment
purchases, (see table)
- - -
- - - -
Sub total - - - -
Total payments 1,402 - - 1,402
Net of receipts/(payments) 3,991 - - 3,991
A5 Transfers between funds - - - -
A6 Cash funds last year end 45,400 - - 45,400
Cash funds this year end 49,391 - - 49,391
**----- End of picture text -----**
|**Section B Statement**|**of assets and liabilities at the end of**|**of assets and liabilities at the end of**|**the period**| |---|---|---|---| |||**Unrestricted**|**Restricted**| |**Categories**|**Details**|**funds**|**funds**| |**B1 Cash funds**|Lloyds Bank account
Paypal
PayPal (held as $ value in £)|**to nearest £**
**49,179**
**182**
**31**|**to nearest £**
**-**
**-**
**-**| CCXX R2 accounts (SS) 2 01/30/2022 ## **B2 Other monetary assets** ## **B3 Investment assets** **B4 Assets retained for the charity’s own use** **----- Start of picture text -----**
Total cash funds 49,391 -
(agree balances with receipts and payments
account(s)) OK OK
Unrestricted Restricted
funds funds
Details to nearest £ to nearest £
- -
- -
- -
- -
- -
- -
Fund to which
Cost (optional)
Details asset belongs
-
-
-
-
-
Fund to which
Cost (optional)
Details asset belongs
Fundraising equipment 100 -
Comms equipment 800 -
-
-
-
-
**----- End of picture text -----**
CCXX R3 accounts (SS) 3 01/30/2022 ## **B5 Liabilities** Signed by one or two trustees on behalf of all the trustees **Fund to which Amount due Details liability relates (optional) - - - - -** ## Signature Print Name James Buller CCXX R4 accounts (SS) 01/30/2022 4 ## **CC16a** ## **Last year** ## **to the nearest £** **111 2,292 2,973 1,464 149 1,461 2,703 1,214 2,134 873 15,375** **-** **15,375** CCXX R5 accounts (SS) 01/30/2022 5 **892** **2,937** **89 536** **-** **-** **4,453** **-** **4,453** **10,921** **-** **34,479 45,400** **Endowment funds** **to nearest £** > **-** 0 **-** **-** CCXX R6 accounts (SS) 6 01/30/2022 OK ## **Endowment funds** ## **to nearest £** **-** **Current value (optional)** **-** **Current value (optional)** **-** CCXX R7 accounts (SS) 01/30/2022 7 **-** **When due (optional)** Date of approval 12/9/2021 CCXX R8 accounts (SS) 8 01/30/2022 **Charity Name No (if any) Aniridia Network 2** **Receipts and payments accounts For the period** 1/4/2020 31/3/2021 **To from** ## **Section A Receipts and payments** **Unrestricted Restricted Endowment Total funds funds funds funds to the nearest to the nearest £ to the nearest £ to the nearest £ £** **----- Start of picture text -----**
to the nearest £ to the nearest £ to the nearest £
£
A1 Receipts
Donation - Amazon 137 - - 137
Donation - CAF Donate 2,666 2,666
Donation - Justgiving 296 - - 296
Donation - DD - - -
Donation - GAYL and EC 78 - - 78
Donation - DONR 24 - - 24
Donation - Other 3,367 - - 3,367
Donation - Facebook 962 - - 962
HMRC Gift aid claim - - -
EAC 2020 - - -
Jun 19 Conf - - -
7,528 - - 7,528
Sub total (Gross income for AR)
A2 Asset and investment sales,
(see table).
- - - -
- - - -
Sub total - - - -
Total receipts 7,528 - - 7,528
**----- End of picture text -----**
## **A3 Payments** CCXX R9 accounts (SS) 9 01/30/2022 **----- Start of picture text -----**
Running costs 748 - - 748
IT costs 336 - - 336
Website subscriptions 307 - - 307
June 2019 Conf - - -
Trustee expenses - - -
Bank fees 11 - - 11
EAC 2020 - - -
- - - -
- - - -
Sub total 1,402 - - 1,402
**----- End of picture text -----**
**----- Start of picture text -----**
A4 Asset and investment
purchases, (see table)
- - -
- - - -
Sub total - - - -
Total payments 1,402 - - 1,402
Net of receipts/(payments) 6,126 - - 6,126
A5 Transfers between funds - - - -
A6 Cash funds last year end 45,400 - - 45,400
Cash funds this year end 51,526 - - 51,526
**----- End of picture text -----**
## **Section B Statement of assets and liabilities at the end of the period** ||||**Unrestricted**|**Restricted**| |---|---|---|---|---| ||**Categories**|**Details**|**funds**|**funds**| |**B1**|**Cash funds**|Lloyds Bank
Paypal|**to nearest £**
account
**49,179**
**182**
**-**
**49,361**
**_Total cash funds_**|**to nearest £**
**-**
**-**
**-**
**-**| CCXX R10 accounts (SS) 10 01/30/2022 ||(agree balances with receipts and payments
account(s))|(agree balances with receipts and payments
account(s))|Agreement Error|OK|| |---|---|---|---|---|---| ||||**Unrestricted**||**Restricted**| ||||**funds**||**funds**| |**B2 Other monetary assets**|**Details**||**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**|




|**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**| |**B3 Investment assets**|**Details**||**Fund to which**
**asset belongs**|**Cost (optional)**
**-**
**-**
**-**
**-**
**-**|| |**B4 Assets retained for the**|**Details**
Fundriasing equipment||100
**Fund to which**
**asset belongs**|**Cost (optional)**
**-**|| |**charity’s own use**|Comms equipment||800|




|**-**
**-**
**-**
**-**
**-**
**-**| CCXX R11 accounts (SS) 01/30/2022 11 ## **B5 Liabilities** Signed by one or two trustees on behalf of all the trustees ## **Details** **Fund to which Amount due liability relates (optional) - - - - -** ## Signature Print Name Emily Nash CCXX R12 accounts (SS) 12 01/30/2022 ## **CC16a** ## **Last year** ## **to the nearest £** **111 2,292 2,973 1,464 149 1,461 2,703 1,214 2,134 873 15,375 - - 15,375** CCXX R13 accounts (SS) 13 01/30/2022 **892** **2,937 89 536** **4,453** **-** **4,453** **10,921 - 34,479 45,400** **Endowment funds** **to nearest £** > **-** - 2,166 **-** CCXX R14 accounts (SS) 01/30/2022 14 ## OK ## **Endowment funds** ## **to nearest £** **-** **-** **-** **-** ## **Current value (optional)** **-** ## **Current value (optional)** **-** CCXX R15 accounts (SS) 01/30/2022 15 **-** ## **When due (optional)** Date of approval 19/5/2020 CCXX R16 accounts (SS) 16 01/30/2022