2023-03-31-accounts - Ring20 Research And Support UK CIO

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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 2022		Day 31	Month March	Year 2023

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 Lytchett House, 13 Freeland Park

Wareham Road Poole, Dorset Postcode BH16 6FA

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
Dale Ward	Patient Representative
Tim Buckinx	Patient Representative	From Nov 2022

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

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Section B Structure, governance and management

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.

Other than our part-time CEO (16 hours per week) Ring20 is run on a voluntary basis. Our CEO volunteers an equal amount of her time to that which is paid.

In the reporting period the Ring20 team comprised 5 regular part-time volunteers, in addition to the CEO, taking on the roles of bid writing, accounts/payroll, families support, social media, research. Several of our family members also stepped up to act as Ring20 Champions, meeting fortnightly for 1 -1 ½ hours to discuss information and support for other families and helping to connect families in their own countries.

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.

New trustees are asked to abide by a Code of Conduct and are issued with Essential Information for Trustees from the Charities Commission, sign a Trustee Declaration and complete a Fit and Proper persons form. They also undergo a DBS check. An org chart details our structure. One new board member was recruited in November 2022, as a patient representative Trustee.

The Medical Advisory Board remains in place with Dr Ailsa McLellan leading as acting Ring20 Chief Medical Advisor, taking over from Prof Sameer Zuberi who stepped down in Feb 23.

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 management, published on our website.

The charity is a member of:

 Brentwood CVS
 Genetic Alliance UK (GAUK)
 Neurological Alliance
CEO represents Ring20 in the Rare Disease sub-group
 EURORDIS
 Rare Revolution Magazine
 International Bureau for Epilepsy (IBE)
 Rare Epilepsy Network (REN)
 UK Rare Epilepsies Together network (UKRET)

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Section C Objectives and activities

To support families, individuals and medical professionals who are Summary of the objects of the affected by, or come into contact with, Ring Chromosome 20 Syndrome. charity set out in its 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. Families Support/Information Services 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 health professionals via our website, enews and social media. Educational Activities We continue to work on raising both public awareness and education amongst key medical professionals throughout the world so they can relate to the signs, symptoms and medical diagnosis of r(20) syndrome. Speaking at and/or hosting an exhibition stand (in-person or virtually) at medical and scientific conferences provides opportunities to fulfil our Summary of the main aims and objectives whilst developing strategic partnerships with activities undertaken for the research facilities, medical and pharmaceutical institutions, and like- public benefit in relation to minded charitable bodies. these objects (include within Research this section the statutory The charity has raised funds to pay for proposed research to be declaration that trustees have undertaken by Glasgow University Hospital into the Natural History and had regard to the guidance biomarkers of r(20) syndrome including the creation of a patient registry issued by the Charity for those currently diagnosed with the disease. Commencement of the Commission on public study continues to be further delayed post the COVID-19 pandemic benefit) despite a financial offer letter sent July 2022. A research study in partnership with Illumina, involving patients supported by Ring20, to improve the diagnostic journey commenced in February 2023 – results are expected in 2024. A new piece of research with Newcastle University is under discussion with the intention of carrying out the research in 2023. This will involve interviews with the families in our community to understand more about the impact of living with Ring20. Interviews will be undertaken by volunteers and the research project will be led by the University. Analysis and a paper will follow.

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)

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

policy on grantmaking;
policy programme related investment;
contribution made by volunteers.

The Ring20 Trustees would like to thank all their volunteers for their support throughout the year. Special mention should go to our volunteers during the period:  Belinda Hunt (Bid Writing)

 Kallif Garlicki (Families Support)
 Laura Giordana (Comms and Italian support)
 Ian Allen (Accounts/Payroll)
 Clara Tang (Research)
 Our Ring20 Champions: o Yvonne Goodson (UK) o Carl Darby (UK) o Andre Reis e Silva (Portugal) o Steve Baumley (USA)

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o Junko Okuda (USA/Japan)

We would also like to thank those who provided pro bono support during the year:  BlueZoo: helping to manage our social media activities.  LawWorks/Gowlings: contractual support for research contracts  LifeArc: draft T&Cs for research

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Section D Achievements and performance

During the period a number of aims were achieved: Summary of the main achievements of the charity Funding/Fundraising during the year The new bid writer has been much more systematic in her approach to applications for grant funding. Unfortunately, part of the post Covid world, has meant a reduction in potential funds and the success rate has been low. Notable member fundraising events included a 24-hour Gamethon, Family Fun Day, sponsored hike, marathon runners, plus several birthday fundraisers on Facebook by members from across the globe. RESEARCH UNRAVEL Phase II: Making genomic understanding of r(20) possible Following blood sample collection from selected families facilitated by the NIHR Bioresource, Illumina commenced an R&D genomic sequencing study on DNA samples. Ring Chromosome Rare Disease Research Cohort We were proud to have applied for and been approved for a rare new disease research cohort for Ring Chromosome disorders by the NIHR Bioresource. We plan to start patient recruitment in 2024 supported by Unique – rare chromosome disorder patient group. New research project with Newcastle University due to start in 2023 (as above). The Trustee Board would like to create a broader Scientific Advisory Board to take over from the existing Medical Advisory Board. The CEO with help from Trustee, Tim Buckinx, will contact individuals known to have an interest in the rare Ring20 condition. These will be drawn from researchers in different countries, geneticists, epilepsy nurses, neurologists and more. The charity recognises the need to be proactive in identifying research projects to further knowledge into the condition as well as seeking funding for research. A decision was taken that the charity cannot currently afford to invest £10K p.a. in a formal registry. For now, this will be created without the software on a smaller scale.

FAMILIES SUPPORT Information and Service Provision Phone/email support was provided to families of those with the condition, as well as 1:1 video calls. We issued our enews bi-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 as well as our ‘Step Into The Ring’ virtual group specifically for adults with r(20) to connect with their peers. Families Conference (including Wellbeing Workshops) A key highlight of the year was our 2[nd] ever Families Conference weekend event in Cambridge, kindly hosted and sponsored by Illumina Inc. The event was mostly delivered hybrid. So that families and interested medical professionals/others could choose to join either inperson or online. The event was attended in-person by 17 r(20) families from countries including UK, Belgium, Netherlands, Slovenia, USA and Australia.

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Section D Achievements and performance

Incorporating our AGM, we kicked off on the Friday evening with a review of Ring20 the charity – our services, team and plans for the future. Our Ring20 Champions were key contributors to this, and we also had a guest speaker from Ring14 Italy to share the Ring14 International model of patient support. We took the opportunity to ask our families feedback on our ring20 services – what’s working well ad what they want more of. On the Saturday we were privileged to deliver a day of speakers (including healthcare professionals, geneticists, scientists, researchers, pharma representatives, patient family representatives) covering topics such as genomics, research and clinical care and treatments as well as patient family real-world experiences. An educational treat for our families was a private tour of the Illumina sequencing labs on the Wellcome genome campus and strawberry DNA extraction by the Illumina training team which were widely enjoyed.

On the Sunday, as a result of funding secured from London

Catalyst/Partners for Health, we were able to run 3 concurrent Wellbeing workshops to improve mental health and relieve feelings of isolation for our mums, dads and young people diagnosed with r(20) syndrome.

Conferences/Events attended + speaker opportunities:

 Epilepsy Research UK Shape Network, London (May 22) – latest in epilepsy research
 CRDN Companies Forum - pharma/biotech discussion on Priority 2 of Rare Disease Framework – educating clinicians in rare diseases (June 22)
 ECRD – (speaker) Inequalities in accessing education, work, independent living (June 22)
 Congenica Patient Engagement Advisory Board – the Ring20 org journey (July 22)
 Patient Engagement Day webinar (Sep ’22)  Gene People Leadership Symposium (Nov 22)  RAREfest22, Cambridge (Nov 22)  Aspire Partnering event for Neurological/CNS disorders – pitch to pharma/biotech (Nov 22)
 Festival of Genomics, London (Jan 23)
 BPNA UK Annual Conference – UKRET shared exhibition stand (Jan 23)

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Section D Achievements and performance

 M4RD:The unusual suspects: Rare disease in everyday medicine (Feb 23)  Rare Disease Day Parliamentary reception (Feb 23)  Rare epilepsies awareness event at Young Epilepsy (UKRET)– in-person (Mar 22)

(Other) Awareness Raising Activities  Participated in the M4RD/Beacon Student Voice Prize essay competition.
 Medics4RareDisease: social media posts for young healthcare professionals, part of their “Mystery Mondays” educational series
 Our work with NIHR BioResource was used by Dept of Health and Social Care as a case study for Rare Disease Day (Feb 23)
CEO networking included:
At the end of December 2022 our CEO stepped down from her role in EpiCARE the European Reference Network (ERN) for rare and complex epilepsies sitting on the steering committee and co-leading the European Patient Advocacy Group (ePAG) for the ERN after >5 years in post. This is to focus more on Ring20 and the development of the UKRET network.  ePAG EpiCARE – ePAG co-lead (until 31[st] Dec ’22) – average 1+ days per week (ePAG co-lead, member of Executive Committee, ePAG rep on Research Council) o Provided feedback on the new eLearning module for clinicians on r(20) syndrome
o EURORDIS volunteer – 210 hrs (26 ¼ days) in 22
Our CEO leads the UK Rare Epilepsies Network (UKRET) she founded comprising patient organisations across the UK representing individuals and families living with rare and complex epilepsies.  UKRET– average 2 days per month o Organising/leading quarterly meetings o Working with Epilepsy Action and ATOS/DWP on new assessment criteria for PIP for rare epilepsies
o Working with Young Epilepsy on organising a rare epilepsies event Sept 2022
- Identifying and welcoming new charities to the network o Seeking opportunities for collaborative activities
 CamRARE Companies Forum (2-3 x per year)
 RC Net – monthly meeting. Support with bid writing
 Genetic Alliance PEG and PAG (input to UK Rare Diseases Framework/action plan)
 BPNA Charities Forum
 Neurological Alliance: rare diseases sub-group rep
 GO FAIR – patient registry group

CEO supporting other charities

 Supporting PLRH/CamRARE in grant application for Rare Disease Research Network
 BPNA PET1 Training for paediatric neurologist – patient representative input/feedback on training course (Feb 23)
 Input to the Epilepsy Research UK Priority Setting Partnership (PSP) to identify the Top10 priorities for UK epilepsy research.

Training/mentoring:

Ring20 benefits from services provided by EURORDIS, Beacon for rare diseases, CamRAR ~~E~~ including mentoring, training, and networking opportunities.

 Workshop | Demonstrating impact: the key to success (July 22)

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Section D Achievements and performance  Workshop | Building positive partnerships between patient groups (Sep 22)  Navigating the CoL crisis: Building resilience to better face challenges (Mar 23)  NCVO: Outcomes and impact measurement Ring20 successfully recruited 3 students who our CEO mentored to develop 3 family case studies and conducted some impact assessment of our current activities (Mar 22) A further 8 students were recruited from London Metropolitan University (Mar 23) to commence work on 2 projects:  Developing promotional materials and brand guidelines for Ring20  Building a website for the URET network

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 2023 was £17,637.64 (of which £13,246 has been designated for salaries and £3,000 designated for running costs), leaving £1,391.64 of Free Reserves which is slightly in excess of policy. The Board will review the policy in Q4 2023.
	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 2023 was £17,637.64 (of which
£13,246 has been designated for salaries and £3,000 designated for
running costs), leaving £1,391.64 of Free Reserves which is slightly in
excess of policy. The Board will review the policy in Q4 2023.

n/a

Further financial review details (Optional information)

During the period to 31 March 2023 the charity raised £40,340 through You may choose to include multiple income streams including Interest Received of £462. 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;

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investment policy and objectives including any ethical investment policy adopted.

The charity spent £45,324 of which the main items of expenditure in support of its objectives are shown below:

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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 03 / 12 / 2023

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Audit trail

Sign

Annual Trustee report 2023 FINAL (signed) Title Annual Trustee re...INAL (signed).pdf File name Document ID af5f14bd163cc412282c7694cb2b067fac30e8d8 Audit trail date format DD / MM / YYYY Status Signed

29 / 11 / 2023 Sent for signature to Lydia Hirst 20:32:48 UTC (lydia@ring20researchsupport.co.uk) from allison@ring20researchsupport.co.uk IP: 162.125.31.121 03 / 12 / 2023 Viewed by Lydia Hirst (lydia@ring20researchsupport.co.uk) 15:06:38 UTC IP: 82.39.102.177 03 / 12 / 2023 Signed by Lydia Hirst (lydia@ring20researchsupport.co.uk) 15:07:21 UTC IP: 82.39.102.177 03 / 12 / 2023 The document has been completed. 15:07:21 UTC

Sign

RING20 RESEARCH AND SUPPORT UK CIO Charity number 1165651 FINANCIAL STATEMENTS FOR THE YEAR ENDED 31st MARCH 2023 COMMUNITY

RING20 RESEARCH AND SUPPORT UK CIO CONTENTS FOR THE YEAR ENDED 31 MARCH 2023 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 2023 Unrestrlctod Restrlcted Fund Fund 2023 Total 2022 Total Nots Recelpts: Donations Sponsorshiplgrant funding Member fundraising Interest received Total re¢èipts 5,749 1,000 3.749 315 29,065 3,708 23,800 12,958 10 40,476 30,065 3,749 462 40,340 462 29,842 10.498 Payments: Charitable payments Charitable activities Total payments 8,945 8.945 36,379 36,379 45,324 45.324 32,453 32,453 Ngt receiptsllpaymentsl 1.553 16,5371 {4,984) 8.022 Prlor year adlustment Transfer between funds 627 627 Net of roCoiptsI{payments) 2.180 16,5371 {4.357} 8,022 Cash funds brought forward 15,407 110,916 126,323 118,300 Cash funds carrfed forward 17.587 104,379 121.966 126,323 The notes on page 3 - 4 fomi part of these accounts

RING20 RESEARCH AND SUPPORT UK CIO STATEMENT OF ASSETS AND LIABILITIES AS AT 31 MARCH 2023 2023 2022 Notgs Cash funds Current account Deposit account 9,603 112,364 121,966 4,748 121,574 126.323 Re resented b Unrestricted funds Restricted funds 17,587 104,379 121,966 15,407 110,916 126.323 Non-rnongta as8etslliabilities 2023 2022 Current assets Debtors 50 50 752 752 Llabllitles Independent examinats'on fee other creditors 250 250 378 628 250 Total assets less liabilities {200 124 These accounts were approved by the Trustees. and signed on thelr behalf by.. Trustee.. Date.. 4th December 2023 Name.. Kim Parks, Treasurer & Trustee

RING20 RESEARCH AND SUPPORT UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2023 1. Accounting policies Basis of the preparation of the accounts These financial statements have been prepared under the historical cost convention and applicable accounting standards. The accounts ale prepared on a cash basis. Incoming resoue5 All material incoming resources have been included on a receivable basis i.e. they are included if the date receivable falls within the peiiod cOVed by these accounts. Resources expended These have been analysed using a natural classffication. Going Concem The charity is operating on a going concem basis. 1.1 These accounts ore prepared on a receipts and payments basis. 2. Donations Unrestrlcted Restricted Fund Fund Total 2023 Total 2022 General donations 5,749 5,749 315 315 6,064 6,064 3,708 3.708 3. Expendlture from charitable a¢tivities Unre$tri¢ted Restricted Fund Fund Total 2023 Total 2022 Cost of sale5 Advertisinglmarkeling Attending conferences & events Hosting conferences & events Literature & materials Website & emai5s Accountancy, examination & audit Wages Director salaries Office expenditure Bank charges Computer costs Insurances Postage Subscriptsons Telephone Training 180 31 723 104 43 255 250 200 267 23.977 203 231 990 24,081 246 255 250 316 1,561 4,805 3,178 250 2,274 16,392 27 154 1,362 453 66 188 389 858 32,453 11.555 109 16,899 112 169 292 456 137 236 510 460 45,324 169 269 456 92 236 510 460 8,945 23 45 36.379

RING20 RESEARCH AND SUPPORT UK CIO NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2023 4. Funds analysis Balance at 01104122 Incoming Funds Expended Funds Transfers inlout Balance at 31103123 Unrestrfcted Running costs Fundraising Deslgnated funds Salaries 1,412 S,522 4,931 6,194 (3,173> (31} 3.170 11,685 8,473 15,407 15.741} 18,945) 2,732 17.587 11,125 Restrlcted funds Family Conference Illumina Research Project Research Fund$ Mental Health Workshops Jeans for Gene5 25,430 1,921 77,553 6,013 26,380 {30,100} 1267} 21,710 1,654 78,015 462 (6,013} 3,000 29.842 3,000 104,379 Totsl rgstricted funds 110,917 {36,380 Totals 126,323 40.967 45,325 121,966 6. Trustee payments During 2023. one trustee received remuneralions of £15.999.9612022'. £15,999.96) as wages during the year. 6. Relatod party trnnsactlons There were no related paty transactions during the year. 7. Key management personnel No staff have earned more than £60.000 during the year.

RING20 RESEARCH AND SUPPORT UK CIO INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 MARCH 2023 I report on the accounts of Ring20 Research and Support UK CIO for the year ended 31 March 2023 which are set out on pages 1 to 4. 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 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. 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 procedures 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 examiner's stst8ment 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 accordan 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 concerning 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 fair, 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. David Courtier FMAAT AATQB for and on behalf of: Community360 ) Winsley's House, High Street, Colchester, Essex Date 8 /iz /aoz