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2021-08-31-accounts

Trustees' Annual Report for the period

Period start date Period end date Day Month Year Day Month Year From 01 09 2020 To 31 08 2021

Section A Reference and administration details

Charity name Down Syndrome UK

Other names charity is known by Positive about Down syndrome

Registered charity number (if any) 1184564

Charity's principal address

5 Hill Close Leamington Spa Warwickshire Postcode CV32 7RQ

Names of the charity trustees who manage the charity

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20		 Trustee name Office (if any) Dates acted if not for whole
**year **		 Name of person (or body) entitled
to appoint trustee (ifany)
Nicola Enoch CEO
Caroline Warren
Sarah Costerton

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

Name Dates acted if not for whole year

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Names and addresses of advisers (Optional information)

Type of adviser Name Address

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

Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document (eg. trust deed, constitution) How the charity is constituted

Constitution

CIO

Appointed by existing Trustees Trustee selection methods

Additional governance issues (Optional information)

Nicola Enoch and Caroline Warren are both Trustees of the Ups of You may choose to include Downs. additional information, where Sarah Costerton is a Trustee of Down’s Syndrome Research Foundation. relevant, about: Caroline Warren is a Trustee of the Scorfen Charitable Trust. • policies and procedures All three Trustees also became Founding Officers of the National Down adopted for the induction and Syndrome Policy Group during the year. training of trustees;

Section C Objectives and activities

RELIEF OF THOSE IN NEED BY REASON OF PARENTS AND FAMILIES OF CHILDREN AND YOUNG PEOPLE WITH DOWN SYNDROME IN THE UK THROUGH THE PROVISION OF A FORUM Summary of the objects of the THAT PROVIDES ACCURATE UP TO DATE INFORMATION ON THE charity set out in its REALITIES OF LIVING WITH DOWN SYNDROME AND IS A CENTRAL governing document HUB OF INFORMATION AND RESOURCES FOR THE CONDITION

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Down Syndrome UK works to improve the lives of people with Down syndrome, and their families. We primarily work in maternity care and the early years providing resources, training and support to parents and professionals to empower those with Down syndrome to thrive and flourish.

Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

Additional details of objectives and activities (Optional information)

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

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Section D Achievements and performance

Summary of the main achievements of the charity during the year

In this second year of charitable registration, DSUK has undergone a rapid expansion of activities, outreach, and engagement. From our inception as a charity providing the lived experience to expectant and new parents via a website, and then distributing contemporary literature to maternity staff and units, we have built on this work, improving, and expanding our excellent website and producing an accompanying book #NobodyToldMe the truth about Down syndrome, that is sent to all expectant and new parents of a baby with Down syndrome (DS). We aim to reach all expectant and new parents of a baby with a high chance or confirmed result of DS. During the year we have expanded our work, reaching more maternity units across the UK. We have achieved this by the introduction of Regional Maternity CoOrdinators, who each liaise with their local maternity units to act as a central point of contact, ensuring a supply of PADS resources are available to expectant and new parents. We also developed a training offer to deliver training sessions online to maternity staff around the country, focusing around sharing best practise, considering language and attitudes, how to share the news baby has/may have DS and having a contemporary understanding of DS. In addition, we have strengthened our on-line communities, with dedicated, closed, Facebook pages for expectant women, new parents, grandparents, bereaved parents, and pre-school parents amongst others. These groups are carefully moderated and monitored by an experienced group of DSUK volunteers along with experts in their field and whilst they are mostly used for hugely appreciated peer support, they have also been useful in identifying issues that parents have worried about but not been able to name and assisting in referral to the correct professionals. In March 2021 we celebrated World Down Syndrome Day with a community fundraiser and were delighted to raise £60,000. Buoyed by this level of community engagement we have moved to increase our reach further by employing a small team of part-time staff. These staff provide administrative support, design services, social media presence, community fundraising support, project management, regional maternity co-ordination and expert leadership for Early Development Groups. With this step-up in activities, we also employed Nicola Enoch as Chief Executive Officer, a role that until July 2021 she had been doing voluntarily, and on behalf of the community her fellow Trustees thank her for all the voluntary work she has done and continues to do for the Down syndrome community. Covid has, of course, provided a unique challenge, but the advent and widespread societal uptake of effective on-line communications platforms, such as Zoom and Teams, has meant that we can reach more families and our on-line offering has expanded to provide Early Development Groups for pre-school early learning and ‘Pants for Schools’ toileting boot camps in collaboration with June Rogers MBE, formerly of Bladder & Bowel UK. Nicola and Caroline became Founding Members of the National Down Syndrome Policy Group that, during this year, started an All Party Parliamentary Group for DS and were chosen by Dr Liam Fox MP to support his Private Member’s Bill; the Down Syndrome Bill, which in June 2022 became enacted into law in England.

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Section E Financial review

We aim to have at least 6 months trading reserve at any one time. Brief statement of the charity’s policy on reserves Details of any funds materially n/a in deficit

Further financial review details (Optional information)

The majority of our income is generated by the generosity of parents, You may choose to include friends and families undertaking a range of challenges and activities to additional information, where support our work. relevant about: • the charity’s principal sources of funds (including any fundraising);

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) Nicola Enoch Caroline Warren Position (eg Secretary, Chair, etc)[CEO ] Date 16th June 2022

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Section E Financial review W¢ aim to havc at lth%t 6 monlh5 tradinq reserve al 3ny one time. Brief statement of the charity'5 policy on reseTve5 D¢talls of any furtds rnaterlally in defirtt Further financial review details IOpti<>nal information) The maionty ot our IncDme 15 generated by the generO￿ty ol parents. friends and fÈrnilios undcrtakirig a ran9c of challcngcs and activitics lo support our work. You may chooso 10 includc additional ii)formalion. wl)ofo re￿vAnI abDUt". the chanty's prin".ipal oiirces of fvinds {Ind￿lt￿j dny lUndrai￿ng}.' how expen*Jiture ha5 supponcd thc kcy objectives (if fh?. r.hHrily'. Ir)vesiiiienl puliLy <iiid objectives Including any othical Invcstmcnt policy t doptod. Section F Other o tional inforrnation Section G Declaration The trustees declare that they have approved the trustees, report above. Signcd on bohalf of Ih(t charrty's trustoes Signature{51 Full name{sl Position (eg Secretary, chair. et¢) Nicola En¢xh I Caroline Warren c£0 Date It)" June 2022 TAR la.th 2012

CHARITY COMMISSION FOR ENGLAND AND WALES Down Syndrome UK 1184664 Receipts and payments accounts CC16a For the porlod from 01-Sep20 31-Aug-21 To Section A Receipts and payments Unrestrlctfjd fund¥ tothenears¥t Restrlctod funds Endowmoni fundB Total funds Last b)th• near•6t £ totho twr•st£ toth• wro8t£ totho n￿rt￿l£ A1 Rgcelpts Ch8tSb1e A¢tyvth6S vol￿tsry Rewpts 33,032 168,940 33,032 158.940 Sub total(Gross income for ARJ 191.972 191,972 A2 Asset and Investment sal•s, Ist• tablo). ub total 191,972 191.972 A3Pa ents $818ty Costs General Ol[￿ costs Cost of Fundraisi￿ Even16 Costs ol CharitsbleActDiilies 14,001 28,129 1.276 41673 141101 28,129 49,673 Sub total 94079 93.079 A4 Asset and In￿$trn￿t purchases, Isee table Sub total 93,079 93,079 Net ofrewpts/(payments) A5 Transf•r¥ botW8en funds A6 Ca$h funds last yèar end Cash funds thls yearend 98,892 98.892 98.892 98,892 CCXX Rl a¢¢ounl$ ISSI 201C6r2022

Section B Statement of assets and liabilities at the end of the period Unre¥tri¢tgd funds Rèstricted funds Endowmènt funds to nureBt £ to hearest£ B1 Cash funds BarAccount 119,059 Totd eash funds 119,059 tisii ￿nr￿trIctd funds to nearo&t£ R•8trieted fund8 to nearost£ End¢)wm•nt funds to noaro¥t £ Fund to whl¢h asset bdon CuYYontV8lu8 lo￿* Co8t Iokrtlonall 83 Investment assets Fundtowhlch assetoelon Currentval onal Cotst lopuonall B4 Assets retslned for the charlty's own use Fund towhlch reldtes Amwntdug 4)n•l ot781 B6 Llabllltles Signed by orE or trustee$ on behalf of a11 the Iru$legs Oate of roval Signature Print Name "f£ CCXX R2 ac¢ounts ISSI 201W2022

Independent examiner's report on the accounts

Sec�ion A Independen� E�aminer�� Repor�

Report to the trustees/
members of
On accounts for the year
ended
Set out on pages		 Charity Name
Down Syndrome UK		 Charity Name
Down Syndrome UK		 Charity Name
Down Syndrome UK
23 July 2019 to 31 August 2020 Charity no
(if any)		 1184564
1 - 2
(remember to include the page numbers of additional sheets)

I report to the trustees on my examination of the accounts of the above chari�� (��he Tr����) for �he period ended 31 / 08 / 2020 . Responsibilities and As the charity's trustees, you are responsible for the preparation of the basis of report accounts in accordance with the requirements of the Charities Act 2011 (��he Ac��) .

I report in respect of my examination of the Tr����� accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent I have completed my examination. I confirm that no material matters have examiner's statement come to my attention in connection with the examination which gives me cause to believe that in, any material respect:

I have no concerns and 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.

Signed: Date: 25 May 2022 Name: Khizer Kayani Relevant professional ACA (Institute of Chartered Accountants England and Wales) qualification(s) or body (if any): Address: 2 Coldharbour Lane, Bushey London, WD23 4NS

Oct

1 2018

IER

Section B Disclosure

Only complete if the examiner needs to highlight material matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).

Give here brief details of any items that the No material matters of concern examiner wishes to disclose .

Oct

2 2018

IER