OpenCharities

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

← Ring20 Research And Support UK CIO

2021-03-31-accounts

Trustees' Annual Report for the period

Trustees' Annual Report for theperiod Trustees' Annual Report for theperiod Trustees' Annual Report for theperiod Trustees' Annual Report for theperiod Trustees' Annual Report for theperiod Trustees' Annual Report for theperiod Trustees' Annual Report for theperiod Trustees' Annual Report for theperiod
**From ** Period start date To Period end date
Day
19		 Month
February		 Year
2020		 Day
31		 Month
March		 Year
2021

Section A Reference and administration details

Charity name Ring20 Research and Support UK CIO Other names charity is known by Registered charity number (if any) 1165651

Charity's principal address 26 Headley Chase

Brentwood Essex Postcode CM14 5BN

Names of the charity trustees who manage the charity

1
2
3
4
5
6
7		 Trustee name Office (if any) Dates acted if not for whole
**year **		 Name of person (or body) entitled
to appoint trustee (ifany)
Allison Watson Secretary
Donald Gordon Chairperson Apr 20 to Oct 20
Kim Parks Treasurer
Claire Sullivan Fundraiser
Chris Sullivan Fundraiser
Lydia Hirst Trustee Oct 20 onwards
Neil White Chairperson Oct 20 onwards

Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name Dates acted if not for whole year

Names and addresses of advisers (Optional information)

Names and addresses of advisers (Optional information) Names and addresses of advisers (Optional information) Names and addresses of advisers (Optional information)
Type of adviser
Name
Address
Grant and Fundraising
Consultant		 Gemma Underwood

Name of chief executive or names of senior staff members (Optional information)

Allison Watson - CEO

March 2012

TAR

1

Doc ID: 1b924ed76971fd5ed4a18530b955a56d34a75619

Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document

CIO association constitution

CIO association constitution (formed 19 February 2016) How the charity is constituted

Trustee selection methods

By appointment of registered members at general meetings and by Trustees

Additional governance issues (Optional information)

You may choose to include additional information, where relevant, about:

Trustees operate in their specific areas of activity but consult on all significant matters of policy formulation, family support and methods of communication about Ring20 information services to medical professionals. Trustee training has continued as needed related to specific areas of activity.. Two new board members were recruited in September 2020, one as Chair and one as Trustee. The previous Chair stepped down in Nov 2020 at the AGM.

The Medical Advisory Board remains in place with Prof Sameer Zuberi taking over from Dr Sophia Varadkar as Ring20 Chief Medical Advisor.

The charity is a member of:

o CEO represents us in the Rare Disease sub-group

and benefits from services provided by EURORDIS, Findacure, CRDN including mentoring, training and networking opportunities.

Our CEO participates in the British Paediatric Neurology Association (BPNA) charities forum and has recently co-founded the UK Rare Epilepsies Network (UK RET) comprising patient organisations across the UK representing individuals and families living with rare and complex epilepsies.

Our CEO continues to provide a significant contribution to EpiCARE the European Reference Network (ERN) for rare and complex epilepsies sitting on the steering committee and co-leads the European Patient Advocacy Group (ePAG) for the ERN. Allison’s role continues to develop and broaden constantly bringing the patient family perspective into discussions.

Further our CEO has input to the new UK Rare Disease Framework Action Plan for England.

The charity has updated its insurance with an international underwriter to cover normal risks and operates the following policies: child protection, data privacy, risk management and volunteer, published on our website.

March 2012

TAR

2

Doc ID: 1b924ed76971fd5ed4a18530b955a56d34a75619

Section C Objectives and activities

Summary of the objects of the To support families, individuals and medical professionals who are charity set out in its affected by, or come into contact with, Ring Chromosome 20 Syndrome. governing document

Ring chromosome 20 syndrome [r(20)] is a rare epilepsy syndrome with case numbers likely to be under-reported worldwide due to lack of awareness of the signs and symptoms.

The charity provides a support group for individuals and families affected by the condition. We aim to provide the latest information on the condition to families and professionals via our website, regular enews and social media.

Summary of the main We continue to work on raising both public awareness and education activities undertaken for the amongst key medical professionals throughout the UK and Europe so public benefit in relation to they can relate to the signs, symptoms and medical diagnosis of r(20) these objects (include within syndrome. Speaking at and/or hosting an exhibition stand (in-person or this section the statutory virtually) at medical and scientific conferences provides opportunities to declaration that trustees have fulfil our aims and objectives whilst developing strategic partnerships with had regard to the guidance research facilities, medical institutions and like-minded charitable bodies. issued by the Charity Commission on public The Charity has raised funds to pay for research to be undertaken by benefit)

The Charity has raised funds to pay for research to be undertaken by Glasgow University Hospital into a Natural History study and registry for those currently diagnosed with the disease. Another research study is proposed in 2021-22 in partnership with Illumina and Glasgow University Hospital, with patients supported by Ring20, to improve the diagnostic journey.

The Trustees consider the charity’s activities are wholly in the public interest and designed to benefit all those who suffer from r(20), their families and medical professionals dealing with this debilitating condition, ’ ‘ ’ in line with the Charity s Commission guidance on public benefit .

Additional details of objectives and activities (Optional information)

The Ring20 Trustees would like to thank all their volunteers for their support throughout the year: Dave Soderquest (to Jun 20), Audrey Everiss (to Jun 20), Samuel Dwinell (Jun-Oct 20), Vydia Kamath (Jun— Nov 20), Clare Carter (Aug-Mar 21), Dale Ward, Jon Dunn.

You may choose to include further statements, where relevant, about:

Special mention should go to our newest volunteers recruited during the period:

.

March 2012

TAR

3

Doc ID: 1b924ed76971fd5ed4a18530b955a56d34a75619

Section D Achievements and performance

Summary of the main achievements of the charity during the year

During the period a number of aims were achieved: The website was updated for all topical information on the condition and fundraising events, and regular enews and biannual newsletters issued. Phone and email support provided to individuals and families of those with the condition.

The pandemic curtailed any in-person events e.g., we had to postpone our planned 2[nd] ever Families Conference event. Fundraising events were significantly reduced. However, we utilised the opportunity to reach out digitally to our members, supporters and wider audience by introducing and/or attending virtual events.

We utilised funding to take on an apprentice to help with our digital communications.

Information Comics

We distributed r(20) information comics free of charge to over 100 families and their medical teams across the world.

Coffee and Chat

In response to the pandemic, we initiated regular online Coffee and Chat sessions via Zoom for our families to meetup online and talk in a safe, supportive environment. This is something we will continue as our member families are widely dispersed across the globe and virtual meetups are sometimes the only way that families can connect.

Natural History/Biomarker research study

The commencement of the proposed Natural History/Biomarker research study with Professor Sameer Zuberi from Glasgow’s Royal Hospital for Children whilst previously approved by the Medical Advisory Board has, as with all non-COVID related research projects, been postponed due to the pandemic. Illumina study

Conferences/Events attended:

Training/mentoring: Connect4Children workshop (Sep 20) CONCORD workshop (Sep 20)

CEO attended Rare Resilience workshops offered by Genetic Alliance UK Apprenticeship Training facilitated by Aspire2Learn

March 2012

TAR

4

Doc ID: 1b924ed76971fd5ed4a18530b955a56d34a75619

Section E Financial review

The charity receives funding for specific purposes which are restricted Brief statement of the charity’s funds – these are not available for expenditure on other purposes. The policy on reserves general reserves are the unspent unrestricted funds of the charity. The charity currently owns no fixed assets, so the general reserve is held in cash. The general reserve is therefore the free reserves of the charity plus any designated funds , also termed ‘unrestricted funds’ in the charity’s balance sheet. The purpose of the general reserve is:  To fund working capital and time lags in the receipt of promised funds  To fund unexpected expenditure, e.g., when projects overrun, or unplanned events occur  Manage economic or regulatory changes which may have unforeseen financial consequences We assess the level of general reserve needed by looking forward and considering the risks to our funding balanced against our expenditure commitments. Future plans show levels of committed expenditure for which we are seeking funding , but to ensure we can continue to operate in accordance with our plans, we hold a general reserve in the range £5,500 - £6,500 to cover unfunded committed costs for the next 6 months. Our general reserve at 31 March 2021 was £11,902 (of which £4,072 has been designated for salaries), leaving £7,830 of Free Reserves which is slightly in excess of policy. The Board will review the policy in Q4 2021. Details of any funds materially n/a

Details of any funds materially in deficit

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

During the period to 31 March 2021 the charity raised £43,839 through multiple income streams including Interest Received of £35 (0.001%): Member Fundraising £2,042 (5%)  Middleton family raffle £ 636  Body shop raffle £ 100  Easter Egg raffle £ 60  Collection pot V Ford £ 55  Facebook Fundraisers £1,191 Donations £5,301 (12%) Members  Regular Donations £ 192  Ad hoc (various) £1,062  Overseas £ 0  Fundraising Fortnight Raffle/donations £1,292 Corporate  Truflow Marine £1,136  Shared Services Connected Ltd £1,000  Western Power £ 300  NRG Collective £ 30 Online  Easyfundraising, Fit4Change, AmazonSmile, Essex Lottery Grant Funding £14,387 (28%)  Pettigrew Charitable Trust Unrestricted £1,000  Genetic Disorders UK Restricted £3,417  TNLF COVID response Restricted £7,950  Cadent COVID response Restricted £2,000 Corporate Sponsorship £20,000 (46%)  Illumina Inc £20,000

March 2012

TAR

5

Doc ID: 1b924ed76971fd5ed4a18530b955a56d34a75619

HMRC gift aid including GASDS £2,094 (5%)

The charity spent £13,474 of which the main items of expenditure in support of its objectives were:

 Producing/distributing comics £5,275  Staff salaries £3,192  Website £1,257  Computer costs £1,132

Our Ring20 patient information comics have been a huge success with our patient families and healthcare professionals alike, across the world, providing insight into living with r(20) syndrome.

Section F Other optional information

Section G Declaration

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s)
Full name(s)
Position (eg Secretary, Chair,
etc)
Date
Lydia Hirst Allison Watson

Chair		 Secretary
2ndDecember 2021
2ndDecember 2021

March 2012

TAR

6

Doc ID: 1b924ed76971fd5ed4a18530b955a56d34a75619

Audit trail

TITLE Annual Trustee report 2021 Final_signed FILE NAME Annual Trustee report 2021 Final.pdf DOCUMENT ID 1b924ed76971fd5ed4a18530b955a56d34a75619 AUDIT TRAIL DATE FORMAT DD / MM / YYYY STATUS Completed

03 / 12 / 2021 Sent for signature to Lydia Hirst 11:30:33 UTC (lydia@ring20researchsupport.co.uk) from allison@ring20researchsupport.co.uk IP: 92.20.23.140 06 / 12 / 2021 Viewed by Lydia Hirst (lydia@ring20researchsupport.co.uk) 16:01:49 UTC IP: 82.39.102.177 06 / 12 / 2021 Signed by Lydia Hirst (lydia@ring20researchsupport.co.uk) 16:02:21 UTC IP: 82.39.102.177 06 / 12 / 2021 The document has been completed. 16:02:21 UTC

RING20 RESEARCH AND SUPPORT UK CIO

Charity number 1165651

FINANCIAL STATEMENTS FOR THE YEAR ENDED 31st MARCH 2021

RING20 RESEARCH AND SUPPORT UK CIO

CONTENTS

FOR THE YEAR ENDED 31 MARCH 2021

Page
Receipts and payments account 1
Statement of assets and liabilities 2
Notes to the accounts 3-4
Independent examiner's report 5

RING20 RESEARCH AND SUPPORT UK CIO

RECEIPTS AND PAYMENTS ACCOUNT FOR THE YEAR ENDED 31 MARCH 2021

Note
Receipts:
Donations
2
Sponsorship/grant funding
Member Fundraising
Interest received
Total receipts
Payments:
Charitable payments
Charitable activities
3
Total payments
Net of receipts/(payments)
Cash funds brought forward
6
Cash funds carried forward
6		 Unrestricted
Fund
£
5,301
1,000
2,434
-		 Restricted
Fund
£
-
33,367
1,701
35		 2021
2020
Total
Total
£
£
5,301
12,049
34,367
6,904
4,136
5,778
35
133
43,839
24,864
12,779
21,503
12,779
21,503
31,060
3,361
87,240
83,879
118,300
87,240
8,735
7,907		 35,103
4,872
7,907 4,872
828
11,074		 30,231
76,166
11,902 106,397

The notes on page 3 - 4 form part of these accounts

1

RING20 RESEARCH AND SUPPORT UK CIO

STATEMENT OF ASSETS AND LIABILITIES AS AT 31 MARCH 2021

Notes
Cash Funds
Current account
Deposit account
Represented by
Unrestricted funds
6
Restricted funds
6
Fixed assets
Equipment
4
Liabilities
Independent examination fee
Other creditors
Total Assets less Liabilities		 2021
2020
£
£
51,194
20,169
67,106
67,071
118,300
87,240
11,902
11,074
106,397
76,166
118,300
87,240
-
4,124
-
4,124
250
-
890
-
1,140
-
(1,140)
4,124

These accounts were approved by the Trustees, and signed on their behalf by:

Treasurer Date: 3rd Decmber 2021 Name: Kim Parks

2

RING20 RESEARCH AND SUPPORT UK CIO

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2021

1. Accounting policies

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement on Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) -(Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006.

1.1 These accounts are prepared on a receipts and payments basis.

2. Donations
General donations
3. Charitable activities
Other project costs
Cost of sales
Attending conferences & events
Fundraising merchandise
Hosting conferences & events
Literature & materials
Website & emails
Accountancy, examination & audit
Wages
Office expenditure
Bank charges
Computer costs
DBS checks
Insurances
Postage
Subscriptions
Telephone
Training
4. Equipment
Website development
Computer hardware		 Unrestricted
Fund
£
5,301
5,301
Unrestricted
Fund
£
64
130
118
-
-
5,673
8
-
-
13
59
414
12
444
828
212
20
(88)
7,907		 Restricted
Fund
£
-
-
Restricted
Fund
£
-
-
-
-
-
52
1,249
-
3,045
-
-
526
-
-
-
-
-
-
4,872		 Total
Total
2021
2020
£
£
5,301
12,049
5,301
12,049
Total
Total
2021
2020
£
£
64
75
130
-
118
658
-
571
-
5,969
5,725
3,500
1,257
7,615
-
1,200
3,045
-
13
-
59
-
940
612
12
124
444
447
828
75
212
327
20
190
(88)
140
12,779
21,503
Total
Total
2021
2020
£
£
-
3,154
-
970
-
4,124

The net book value in 2021 has reduced to £Nil as depreciation has been applied and corrected due to depreciation not being applied at all since the purchase of the items. They have no value.

3

RING20 RESEARCH AND SUPPORT UK CIO

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2021

6. Funds analysis
Unrestricted
General Fund
Running costs
Fundraising
Designated funds
General designated
Comic Workshop
Restricted funds
COVID Cadent
COVID TNLF
Family Conference
Illumina Research Project
Research Funds
Social Media Support
Total restricted funds
TOTALS		 Balance
at 01/04/20
£
10,233
(6,491)
(65)
(673)
8,070
11,074
-
-
7,972
-
66,799
1,395
76,166
87,240		 Incoming
Funds
£
-
2,573
6,162
-
-
8,736
2,000
7,950
4,485
20,000
668
-
35,103
43,839		 Expended
Funds
£
(3)
(2,883)
-
(93)
(4,928)
(7,907)
-
(2,135)
-
(2,737)
-
-
(4,872)
(12,779)		 Transfers
in/out
£
-
-
-
-
-
-
-
-
-
-
-
-
-
-		 Balance
at 31/03/21
£
10,230
(6,801)
6,097
(766)
3,142
11,903
2,000
5,815
12,457
17,263
67,467
1,395
106,397
118,300

7. Trustee payments

During 2021, no trustees received any payments from the charity.

8. Related party transactions

A trustee received remuneration for their CEO role (Allison Watson) for a total of £2666.66 for 2021.

9. Going concern

The charity is operating on a going concern basis.

10. Key management personnel

No staff (self employed) have earned more than £60,000 during the year.

4

RING20 RESEARCH AND SUPPORT UK CIO Charity number 1165651 FINANCIAL STATEMENTS FOR THE YEAR ENDED 31st MARCH 2021 COMMUNITY

RING20 RESEARCH AND SUPPORT UK CIO CONTENTS FOR THE YEAR ENDED 31 MARCH 2021 Page Receipts and payments account Statement of assets and liabilities Notes to the accounts 34 Independent examiner's report

RING20 RESEARCH AND SUPPORT UK CIO RECEIPTS AND PAYMENTS ACCOUNT FOR THE YEAR ENDED 31 MARCH 2021 Unrestricted Restricted Fund Fund 2021 Total 2020 Total Notg R•eelpt8: Donations Sponsorshiplgrant funding Member Fundraising Interest received Total recelpts 5.301 1,000 2,434 5.301 34.367 4,136 35 12,049 6,904 5.778 133 24,864 33.367 1,701 35 35.103 8.735 43,839 Payments: Charitablg paymgnts Charitable activities Total paymonl¥ 7.907 7,907 4.872 4,872 12,779 12,779 21,503 21,503 Not of rec8lpt$l{paymont$l 828 30,231 31,060 3,361 C#$h funds brought ft>rward 11.074 76,166 87,240 83.879 Cash funds carrled forward 11,902 106.397 118,300 87,240 The notes on page 3 - 4 form part of these accounls

RING20 RESEARCH AND SUPPORT UK CIO STATEMENT OF ASSETS AND LIABILITIES AS AT 31 MARCH 2021 2021 2020 Notes Cash Funds Current account Deposit account 51.194 67,106 118,300 20,169 67,071 87,240 resented b Unreslricled funds Reslricled funds 11,902 106.397 118.300 11.074 76.166 87,240 Flx8d a$s8t Equipment 4,124 4,124 Independent examination fee Other ¢redilor5 250 890 1,140 Total Assets less Liabilities 1,140 4,124 These aceounls were approved by the Trustees. and signed on their behalf by.. Treasurer Date.. 3rd Decmber 2021 Name.. Kim Parks

RING20 RESEARCH AND SUPPORT UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2021 1. Accounting policies The financial statements have been prepared in accordance wth Accounting and Reporting by Charib'es.. Slalemenl on Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021 leffeclive 1 January 201914charilies SORP IFRS 10211, the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 102} and the Companies Act 2006. 1.1 These accounts are prepared on a receipts and p8yrnenls basis. 2. Donatlons Unrestricted Restrlcted Fund Fund Total 2021 Total 2020 General donations 5,301 5.301 5.301 5,301 12,049 12,049 3. Charltablè actlvltl68 Unrestrlcted R8strletgd Fund Fund Total 2021 Total 2020 Other project costs Cost of sales Attending conferences & events Fundraising merchandise Hosting conferences & events Literature & materials Websit& & emails Accounlan¢y. examination & audit Wages Office expenditure Bank charge$ Computer costs D8S checks Insurances Poslago Subscriptions Telephone Training 75 130 118 130 118 658 571 5,969 3,500 7,615 1,200 5.673 52 1,249 5,725 1.257 3.045 3.045 13 59 940 12 444 828 212 20 {881 12,779 13 59 414 12 444 828 212 20 188} 7.907 526 612 124 447 75 327 190 140 21,503 4,872 4. Equlpment Total 2021 Total 2020 Websilg dovelopment Computer hardware 3,154 970 4,124 The nel book value in 2021 has reduced to £Nil as depreciation has been applied 8nd wrrecled due to depreciation not being applied at all since the purchase of the items. They have no value.

RING20 RESEARCH AND SUPPORT UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2021 6. Funds analysls 8alance at 01104120 Incorning Funds Expendod Funds Transfers inlout Balance at 31103121 Unrggtricted General Fund Running costs Fundraising Deslgnated funds General designated Comic Workshop 10.233 16.4911 {651 131 12,8831 10,230 16,8011 6,097 2,573 6.162 (6731 8.070 1931 14.928} (7661 3,142 11.074 8,736 17,9071 11,903 Rostrlct8d fund$ COVID Cadenl COVID TNLF Family Conference Illumina Research Project Research Funds Social Media Support Total rgstrlcted funds 2.rJ)o 7.950 4.485 20.000 668 2,000 5,815 12,457 17,263 67,467 1,395 106.397 12,1351 7,972 12,7371 66,799 1.395 76.166 35,103 {4,872) TOTALS 87,240 43,839 12.779 118,300 7. Trustee payments During 2021, no trustees received any pawn8nl$ from the ¢hanty. 8. Related paity transa¢tlons A Irusleè reeeived remuneration for their CEO ro￿ (Allison Walson} for a tolal of £2666.66 for 2021. 9. Golng concern The charity is operab'ng on a going concem basis. 10. Kgy managemont personnol No stsff Isew employed) have eamed more than £60.000 during the year.

RING20 RESEARCH AND SUPPORT UK CIO INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 MARCH 2021 I report on the accounts of Ring20 Research and Support UK CIO for the year ended 31 March 2021which are set out on pages 2 to 4. Respectlve responslbllitles of trustees and examiner The Charity's Trustees are responsible for the preparation of the accounts. The Charity's Trustees consider that an audit is not required for this year {under section 144 (2) of the Charities Act 2011 (The Act) but that an independent examination is needed. It is my responsibility to.. Examine the accounts under section 145 of the Chartties Act, To follow the procedures laid down in the General Directions given by the Charity Commissioners (under section 145(5)(b) of the Charities Act, and To state whether particular matters have come to my attention. Basls of independent examiner's Statement My examination was carried out in accordance with the General Directions given by the Charity Commissioners. An examination includes a review of the accounting records kept by the Charity and a comparison of the accounts presented with those records. It also includes considerations of any unusual items or disclosures in the accounts. and seeking explanations from you as trustees conceming any such matters. The prO￿dureS undertaken do not provide all the evidence that would be required in an audil and consequently I do not express an audit opinion on the view given by the accounts. Independent examiner's statement In the course of my examination, no material matters have come to my attention which gives me cause to believe that in, any material respect.. the accounting records were not kept in accordance with section 130 of the Charities Act., or the accounts did not accord with the accounting records,. or the accounts did not comply with the applicable requirements conceming the form and content of the accounts set out in the Charities (Accounts and Reports} Regulations 2008 other than any requirement that the accounts give a true and fairf view which is not a matter considered as part of an independent examination. I 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. Shelley-marie Rudling FMAAT AATQB for and on behalf o Community360 Winsley's House, High Street. Colchester, Essex Date 1021