2022-03-31-accounts - Ring20 Research And Support UK CIO

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

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 01	Month April	Year 2021		Day 31	Month March	Year 2022

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

Trustee name	Office (if any)	Dates acted if not for whole year
Lydia Hirst	Chairperson
Allison Watson	CEO/Secretary
Kim Parks	Treasurer
Chris Sullivan	Fundraiser
Dale Ward	Patient Representative	From Dec 21
Claire Sullivan	Fundraiser	To Nov 21
Neil White	Chairperson (resigned)	To Oct 21

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

Section B Structure, governance and management

March 2012

TAR

Doc ID: 6ab510e2b461807f8429f5f187eadcba6fccbb24

Description of the charity’s trusts

Type of governing document

CIO association constitution

(eg. trust deed, constitution)

How the charity is constituted

CIO association constitution (formed 19 February 2016)

(eg. trust, association, company)

Trustee selection methods

(eg. appointed by, elected by)

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:

policies and procedures adopted for the induction and training of trustees;
the charity’s organisational structure and any wider network with which the charity works;
relationship with any related parties;
trustees’ consideration of major risks and the system and procedures to manage them.

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. One new board member was recruited in December 2021, as a patient representative Trustee. The previous Chair stepped down in Oct 2021, as did one of our Fundraising Trustees.

The Medical Advisory Board remains in place with Prof Sameer Zuberi leading as Ring20 Chief Medical Advisor.

The charity is a member of:

 Brentwood CVS
 Genetic Alliance UK
 Neurological Alliance

o CEO represents us in the Rare Disease sub-group

 EURORDIS
CEO is a EURORDIS volunteer
 Rare Revolution Magazine
 International Bureau for Epilepsy (IBE)
 Rare Epilepsy Network (REN)
 Commission for Neurodevelopmental CNVs

and benefits from services provided by EURORDIS, Findacure (now Beacon), CRDN ~~i~~ ncluding mentoring, training and networking opportunities.

Our CEO participates in the British Paediatric Neurology Association (BPNA) charities forum and leads the UK Rare Epilepsies Network she founded (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

Doc ID: 6ab510e2b461807f8429f5f187eadcba6fccbb24

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) Glasgow University Hospital into a Natural History study and registry for those currently diagnosed with the disease, commencement of the study has been further delayed due to the COVID-19 pandemic. Another research study is proposed in 2022/23 in partnership with Illumina, involving 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. You may choose to include Special mention should go to our newest volunteers recruited during the further statements, where period: relevant, about:  Kallif Garlicki (Families Support)

policy on grantmaking;
policy programme related investment;
contribution made by volunteers.
 Laura Giordana (Comms)
 Ian Allen (Accounts)  Clara Tang (Research)
 Shahid Mughal (Operations Management) to Jun 21
 Ana Vieitez (Funding) to Dec 21
 Jon Dunn (Ring20 map)
We also employed the services of the following part-time staff member for 5 months:
 Vinay Pitrola (Digital Marketing Apprentice) to Sep 21

March 2012

TAR

Doc ID: 6ab510e2b461807f8429f5f187eadcba6fccbb24

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:

Due to the pandemic fundraising events remained significantly reduced this year. However, we benefitted unexpectedly from ‘In Memory’ fundraising following the passing of one of our members. continued to reach out digitally to our members, supporters, and wider audience by introducing and/or attending virtual events.

Upgraded website

We launched our newly upgraded website which remains a key source for all topical information on r(20) syndrome and the charity’s activities – we now have auto translation in 6 languages.

UNRAVEL Phase I: Making genomic understanding of r(20) possible

We launched a new educational project comprising a variety of assets on our website explaining the basics of the genetics of r(20) syndrome for the benefit of families and healthcare professionals. The highlight was the production of a short animation film.

Families Support

Phone/email support was provided to families of those with the condition, as well as some 1:1 video calls. We issued our enews monthly and provided continuous updates on social media every week. We continued our regular online Coffee and Chat sessions via Zoom for our families to meetup online and talk in a safe, supportive environment. We also initiated a new virtual meeting group ‘Step Into The Ring’ specifically for adults with r(20) to connect with their peers.

Wellbeing Workshops

As a result of funding secured from Pears Foundation, we began a short series of Wellbeing workshops to improve mental health and relieve feelings of isolation for our parents/carers.

Conferences/Events attended:

 Epilepsy Foundation Research Roundtable for epilepsy – speaker (Apr 21)
 CRDN Companies Forum (May 21)
 EJPRD General Assembly - speaker (Sep 21)
 CRDN RareSummit – speaker (Oct 21)
 Global Keto – exhibition stand (Oct 21)
 In Search of Lost Time, Rome virtual workshop (Dec 21)
 BPNA UK Annual Conference – virtual exhibition stand and Paediatric Neurology Charities Meeting (Jan 22)
 Beacon Int’l Rare Disease Showcase – virtual exhibit (Feb 22)

Training/mentoring:

Apprenticeship Training – Aspire2Learn

Ensuring inclusive communications around genetics (Apr 21) Patient group experiences of using data (May 21) Raising the profile of your condition (Oct 21)

Creating a presence: increasing visibility of your patient group (Mar 22) Sustaining engagement from your patient community (Mar 22)

March 2012

TAR

Doc ID: 6ab510e2b461807f8429f5f187eadcba6fccbb24

Section E Financial review

Brief statement of the charity’s policy on reserves Details of any funds materially in deficit	The charity receives funding for specific purposes which are restricted funds – these are not available for expenditure on other purposes. The 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 £10,000 - £12,000 to cover unfunded committed costs for the next 6 months. Our general reserve as at 31 March 2022 was £15,780 (of which £8,400 has been designated for salaries), leaving £7,380 of Free Reserves which is slightly in excess of policy. The Board will review the policy in Q4 2022.
	n/a

Brief statement of the charity’s
policy on reserves
Details of any funds materially
in deficit

The charity receives funding for specific purposes which are restricted
funds – these are not available for expenditure on other purposes. The
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 £10,000 - £12,000 to cover unfunded committed costs for the
next 6 months.
Our general reserve as at 31 March 2022 was £15,780 (of which £8,400
has been designated for salaries), leaving £7,380 of Free Reserves
which is slightly in excess of policy. The Board will review the policy in
Q4 2022.

n/a

Further financial review details (Optional information)

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

the charity’s principal sources of funds (including any fundraising);
how expenditure has supported the key objectives of the charity;
investment policy and objectives including any ethical investment policy adopted.

During the period to 31 March 2021 the charity raised £39,515 through multiple income streams including Interest Received of £10 (0.001%): Donations £3,758 (9.5%) Corporate £1,500 (3.8%)  Bank of Ireland £450  Movement for Good £1,000  Other £50 Members £626 (1.7%)  Ad hoc (various) £304  Regular Donations £322 Online £583 (1.5%)  easyfundraising, SmileAmazon, Essex Lottery. PayPal Giving Facebook Fundraisers £963 (2.4%)  of which from Overseas £784 Raffles, online games of chance £86 (0.2%) Grant Funding £22,800 (57.7%)  Brian Mercer Trust Restricted £12,500  Pears Foundation Restricted £5,000  HSF/London Catalyst Restricted £5,000  Marsh Christian Trust £300 Member Fundraising £12,958 (32.8%)  Shahid Triathlon Restricted £615  Kirstie Hansford ‘In Memory’ Restricted £9,432  Bonus Ball lottery x2 (N Middleton) £486  Body shop raffle (J Haggerty) £122

March 2012

TAR

Doc ID: 6ab510e2b461807f8429f5f187eadcba6fccbb24

 JustGiving (various) £1,695  Georgia Duffy: Great North Run £472  Collection pots £136 HMRC gift aid including GASDS £0 (0%)

The charity spent £30,400 of which the main items of expenditure in support of its objectives were:  Staff salaries £17,739  Website £3,178  UNRAVEL Animation £4,534  Wellbeing workshops £1,272  Computer costs £1,362

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) Allison Watson Full name(s) Lydia Hirst Position (eg Secretary, Chair, Chair Secretary etc) Date 16th September 2022

March 2012

TAR

Doc ID: 6ab510e2b461807f8429f5f187eadcba6fccbb24

Audit trail

TITLE Annual Trustee report 2022 FINAL_signed FILE NAME Annual Trustee report 2022 FINAL.pdf DOCUMENT ID 6ab510e2b461807f8429f5f187eadcba6fccbb24 AUDIT TRAIL DATE FORMAT DD / MM / YYYY STATUS Signed

16 / 09 / 2022 Sent for signature to Lydia Hirst 08:03:58 UTC (lydia@ring20researchsupport.co.uk) from allison@ring20researchsupport.co.uk IP: 104.248.169.17 16 / 09 / 2022 Viewed by Lydia Hirst (lydia@ring20researchsupport.co.uk) 10:06:52 UTC IP: 217.192.101.2 16 / 09 / 2022 Signed by Lydia Hirst (lydia@ring20researchsupport.co.uk) 10:07:54 UTC IP: 217.192.101.2 16 / 09 / 2022 The document has been completed. 10:07:54 UTC

RING20 RESEARCH AND SUPPORT UK CIO Charity number 1165651 FINANCIAL STATEMENTS FOR THE YEAR ENDED 31st MARCH 2022 COMMUNITY

RING20 RESEARCH AND SUPPORT UK CIO CONTENTS FOR THE YEAR ENDED 31 MARCH 2022 Page Receipts and payments account Statement of assets and liabilities Notes to the accounts 34 Independent examinerfs report

RING20 RESEARCH AND SUPPORT UK CIO RECEIPTS AND PAYMENTS ACCOUNT FOR THE YEAR ENDED 31 MARCH 2022 Unrestrict•d R•$trictad Fund Fund 2022 Totsl 2021 Total Note Ro¢elpts: Donations Sponsorshiplgrant funding Member fundraising Interest received Total r•colpts 3.708 300 2.911 3.708 23,800 12,958 10 5,301 34,367 4.136 35 43.839 23,500 10,047 io 33.557 6.919 40,476 Payments: Charltsble payments Charitable activitr'es Total paymènts 7,772 7.772 24,682 24,682 32.453 32,453 12,779 12.779 Net recelptsllpayments) {853) 8,875 8.022 31.(160 Transf•rs Ien funds 4.357 14,3571 Net ol rtr¢•lptsl(paymentsl 3,504 4,518 8,022 31.060 Cash funds brought forward 11,902 106.397 118.300 87,240 Cash fund$ rrIed forward 15,407 110,916 126.323 118.301 The notes on page 3 - 4 form part of these accounts

RING20 RESEARCH AND SUPPORT UK CIO STATEMENT OF ASSETS AND LIABILITIES AS AT 31 MARCH 2022 2022 2021 Notss Cash Current account Doposit account 4,748 121,574 126,323 51,194 67,106 118.300 ro$èntod b Unrgstricted funds Restricted funds 1 S,407 110,916 126.323 11.902 106,397 118,300 Nonamoneta assets 11 bllitles 2022 2021 Flx¢d assets Equipment Current ass• Debtofs 752 752 Llabllltl¢ Independent examination fee Other creditors 250 378 628 250 890 1,140 Total assets less liabilsbes 124 1,140 These accounts were approved by the Trustees, and sNJned on their behalf by.. Tr8asur8r Dale.. 0511012022 Name: Kim Park5

RING20 RESEARCH AND SUPPORT UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022 1. AGcounting poll¢le$ The financial statements have bggn prepared in accordance with AcccHJnting and Reporting by Charlties: Slalement on Recommended Practice applicable lo charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021 {effective 1 January 2019}-(Charilies SORP IFRS 1021}, the Financial Reporting Standard appIlble in the UK and Republic of Ireland IFRS 1021 and the Companiès Act 2006. 1.1 These accounts are prepared on a receipts and payments basts. 2. Donatlons Unrestricted R•strlct•d Fund Fund T¢tal 2022 Total 2021 G8neral donations 3.708 3.708 3,708 3.708 5.301 5,301 3. Exp•ndlture from charltable adlvlti0S Unrgstrictod R•strlctod Fund Fund Total 2022 Total 2021 Other project costs Cost of sales Attending conferences & events Hosting conf$rences & events Lllerature & materials Website & emails Accountsncy, axamination & audit Wages Director salaries Office expenditure Bank charges Computer costs DBS checks Insurances Postago Subscripllons Telephone Training 180 316 499 271 142 250 160 316 1,561 4.805 3,178 250 2,274 16.392 27 154 1.382 130 118 1,062 4,534 3,036 5.725 1.257 2,274 12.392 3.045 4,000 27 154 529 13 59 940 12 833 453 66 188 389 308 7.772 453 66 188 389 858 32.453 828 212 20 (881 12.779 550 24,682 Equlpment Totsl 2022 Total 2021 Website developmant Computer bardware The nel book value in 2021 was reduced lo £Nil as depreciatfjon has been applled and correctèd due to depreck4tion not being applied at all sirlce the purchase of the ilems. They have no value.

RING20 RESEARCH AND SUPPORT UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022 6. Funds analysls Balance at 01104121 Incomlng Funds Expended Funds Transfers Inlout Balan¢• at 31103122 UnYestrf¢ted General fund Runnirlg costs Fundraising Deslgnated lunds General designated Salarles Comic workshop 10,230 16,8011 6.097 110,2301 9,260 {4,7701 2,509 4,410 13,556) (215) 1,412 5.522 17661 766 12,473 {3,1421 4.357 14,000 8,473 3,142 11,903 6.919 17.772> 15,407 Re$trlcted funds COVID Cadenl COVID TNLF Family Conference Illumina Research Project Research Funds Mental Health Workshops Social Mgdia Support Total rostricted funds 2,000 5.815 12,457 17.263 67.467 12,0001 13,8241 473 115,3421 1,000 12,500 {2,9911 25.430 1,921 77,SS3 6,013 10,057 10,000 29 {3,987) 1.395 106.397 11,3951 {4.3571 33.5S7 124,681) 110,916 Totsls 118,300 126,323 7. Trustee paym•nts During 2022, one trustee received remunerations of £15.999.9612021: £2,666.66) as wages during the year. 8. Rolatad party tran5actlon$ There were no related paty transacttons during the year. 9. Going concern The charity is operating on 8 going con¢em basis. 10. Key managemont porsonnel No staff have eamed more than £60.000 durin9 the year.

RING20 RESEARCH AND SUPPORT UK CIO INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 MARCH 2022 I report on the accounts of Ring20 Research and Support UK CIO for the year ended 31 March 2022 which are set out on pages one to four. Respective responsibilities 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 Charities Act., To follow the procedures laid down in Ihe General Directions given by the Charity Commissioners (under section 145(5){b) of the Charaties Act)., and To state whether particular matters have come to my attention. Basis 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 concerning any such matters. The Pfocedures undertaken do not provide all the evidence that would be required in an audit and consequently I do not express an audit opinion on the view given by the accounts. Independent examinerfs statement In connection with 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 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 of.. Community360, Winsley's House High Street, Colchester, Essex

RING20 RESEARCH AND SUPPORT UK CIO Charity number 1165651 FINANCIAL STATEMENTS FOR THE YEAR ENDED 31st MARCH 2022 COMMUNITY