OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2021-03-31-accounts

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 Aniridia Network

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

Education

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

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.

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

Pandemic effects:

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

Top blog posts:

Email newsletter

Social media

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

Focus of the Young Aniridics takeover for #RareReality campaign for #RareDiseaseDay

Youtube

• Published 4 videos with captions

Facebook

1063 followers

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.

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:

Volunteers needed

More volunteers are badly needed especially people with skills in:

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

Management roles

• 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