2021-12-31-accounts

Trustees. Annual Report for the period Penimj slart dale Perirxl end date From Section A Reference and administration details Charlty nam• tt Hcpkins UK Other names charlty Is known by R•glstgr•d charity numb•f111 any) 1167153 Charlty'$ prfnclpal addr•s¥ 76 Auckland. Road IKord Essex Po•tcod• IG14SF Names of ¢haflty trust••8 who manago th• charlty Dat•S 01 not lor*hol• Tru8t•• nar OfllE• IM •ryl W￿• of mtyi lor botyl •ntitl• Int trn•l•• Sue Roulledge Bnan RoLJllgdge Leanno Groves Julie Cooper Debbie 8romley Juliè Penniall Chair 01101121 -01104r21 Frw 12107121 onwards 01101121- 30KJ9121 Melissa Stewart Virginia Roulledge Treasu¥er 10 12 13 14 15 16 18 19 20 Names ol the truslees for tho charlty, rf any. (for •Mamph. any custodlan trust••s Name ' Dat•• acted If not lof whol• ear TAR 11•th 2012

m•• and •ddrniM ol advi%•rn IOplion•l inlormitionl ol ad¥i••r Addr••¥ NAM• of ch￿1 •x•¢u¢iv• or n•m•• of wnlor Jtaff MEM￿1$ (Optional infomwtlon) Section B Structure, overnance and mana ement De•¢ription ol th• ¢hnty• Ir￿1$ Type ol goveming (hjcurrnnt •th"tten consb"bJbon How the charty is consblut¢d cio TNsl•e s•knckn'on mfrthods Appoml•d by tru8l•e$ Addltion•l go¥•m•nu isu•• {OptioMI inforn)•donl You may choos¢ to m¢lude a¢ditional Inlormabon, there relevanl, 8b)ul Julva P•nnii1l pa$8•d aft•r an thort Iln•ss in 2021 aft•r h8ving s•Ntd n•arly fiv• y••rs as • truile•. po&¢ie$ and procedurts adopted loi the Inducbtsn and Iraining of tru51ee5. the chanty's or9anisglM>nal 5truclurn and any v ne￿Ork wth ￿ttl¢h thfj d￿fity works. relabon$hip Vilh any rnlal•d p8rts. trusl•es' C￿nsidera1￿ of major nsks and the system and pmcedures lo nynage Ihem M•h'ssa StMrt •# ppoml•d as • trusteo m Juty 2021. Section C Ob'ectives and activities 1. (11 Raismg warnn•$s of Pitt-Hopkffjs 6yndffKn• lor th• public 2. 121 SuP￿rbn9 fary41￿5 by F￿¥￿I￿g InloTmatson Ind lund￿9 10 faulitale opportunities lo meel Summ•ry of th• obJ•¢ts ol th• ¢harity Sèl Out in Its goveminq docum•nl 3. {31 ma￿n9 conthci *ilh m•dical •nd sopal PYDfessK)n41s 4 (41 Fundmg rnw•rch TAR 2012

Support￿9 ongoin9 research by Professor Smidt PLblicalion ol the Infornial￿n I￿)0k￿l based on Ihe published M#nag6ffnl Guthlmes th"s¢ussed al the 2018 Vknrkl Congress Maintenance and ￿￿￿ement ollhe14tt Hopkins UK V4pbsl￿ and mobile phone app. On-l￿e hosbng of smaller Inlomwl D)ffee meetings lor palen15 SumThiary of the main activities undertaken lor the public benefit in rnlation to ItrLe$¢ objects lin¢lude bwthin this seetion the slatutory declaration that trustèès hav had règard ¢0 the guid•n¢• issu•d by the Charity Commission on p•Jbli¢ ben•fitl Partiupabon as a patienl advocate in ihe ePAG. Ipatsent advoracy Grovpl lor ERN (European Reference Net¥wrkl ITHACA Taking part in on-going training on njnn￿g a small cJ)anty. Reprgsenbn9 Prtl Hopkins UK at netings and evenls Improvement ol chanty govemance AJI have been undertaken wilh due r•garo lo tht guKlance issu•d lo trusloes ty the Charity Cormiiswn on public ben•fil Additional detslls ol obfvcllws and actlviti (Optloml infornwilonl P¢lt-Hopkins nKJbile phone app management and elerrnnts of the vr4bsil red•$ign are prowded by volunt*•rs You may choose lo Inclufje further slalemenls, %there relevanl. aboul. policy on granlffoking. policy programme reL4led Investmenl, conlribulion made by volunteers TAR Il¥ch 2012

Section D Achievemenls and performance Summary ol ¢h main a¢h￿¥M•nIl of th• chrity during th• y•ar Raising Awrnn••slSupport The thanty Con￿￿e￿ lo dbssemrhAl• inl0mMt￿n and prowde SUPPDrt tc parenls and fan11￿S wa a d•dicaled phone line, ¥￿bSile. app. sooal dia. e-mail and personal contacts The 1n1orm81￿n booklet based on th• paienl-tn•ndly version ol the manageffnl guidelines prrjduced dunng 2019 for parents was compleled, pnnted and publish•d Inter¢$l ￿ the l￿okIe1 wa5 1"eceived trom vanous o¥tr5eas groups A leallel lor fvnd r4is¢rs and a 'Thank You, carf V•re designed and produ¢•d An onlme meetsng frr FatheTs look place 1.1 May 2021 A mailffjg Ilsi %Yas constructsd In prepar4tion for 4 n￿￿letter vknith was publish•d ift December 2021. As in pr•wous y•ars. F&ebook Profile photos lor use on Pitt-P,opkins Awareness Day Iseplenknr 181 were pr•pared An Awareness Oay campaign video also produced The Chanty continued to w)rk in p8rtrersh(p the Cambridge Rar8 Di.8ase NefvKJrk ICRDNI. FindavJrg. EUROROIS, Genetic Alliance UK and Rare Revolubonanes. Conlod wa$ made wlh 8r•aknng DoTr Barnrs In S•pi•mb8r 2021. in conjunction with the S•dish 8nd Dui¢h groups, an online meeting for partnts was held Mth OT. sylv￿ Huisrn8n and Dr. Leone Menk• from the Pitt-HopkTrn$ Syndro￿ clinK Amslefdam Medical Centre Adminlstrltion The Imstee5 mtrl thr¥• brM$ durmg the y•ar, the rNoling$ bemg on-line The AGM was held lon-lin•l In November 2021 A review ol ¢honty policAes VAS ￿pUn. T￿) students from Bnghton University took part in a virtual In￿m$hiP h Ihe chanty a￿Ing the g•n•ral adnwnistration. Grant n￿neY wa$ used to pay for a wrtual assislanl lo support the Chair Ih 8dnThnistratson tssks aDd tor pn)feswnal help V•T¢h the %bsite re- design A se¢ond banner w45 ￿rchased A laplop and pnnter ￿Te finally purtha$ed ¥Ath a grant trom Pears Foundalion The Chaw, as 8n ¥PAG advocate and an elected ffmber ol Ihe patienl bo3￿ for ERN ITHACA part￿pated In online training courses The thanty had nJnn8rs in Ihe Virtual Vitality 10K In Marth and four runners In Ihe London Virtual Maralhon in Odober 2021 YAR 2012

Section D Achievements and performance The tree Hopki$ UK mbile Fthone app VAS ￿¥￿V￿d and updating continued IFund isin The rwin int£¢me stream in 20218gain came Irofn granls ffDm the Nalional Lottery. Pear5 Foundatbjn. Virgin Money Giving. Facebook and Gift Aid 20% 01 Inco￿ VA5 ra15ed from IndivSual donabons and lundraigng efforts As Ihe Virgin Money Givmg sch8n had annoUn￿d it v+l)u￿ dose, Give As You Live YAS k¥Drnled 4$ the TrRlhod for ¢ollèthno donalions by fundra￿r$ In Novemtr, Prolessor Marten SM￿, by Zoom, upjated Ihe trustees and some par•nts ol wowss m the re58arch project being co-lunded by Pllt Hopkins UK TAR wch 2011

Sectlon E Financial review Br1 stst•rn•nl of th• ehanty'i poliey on r￿￿1 £5000 hold ** Oetails ol any funds maNIIy In d•lieil None Further fiMnel•l rnvi•w d•tail• (Optional infornwts'on) Grants, Gift A￿. dOnat￿n sch•m)$ e g., Virgin Money Giwng, Inthvidual lun&rnismg. You may cho￿• lo Indud• addilional inlomwbon. Ithere reknyanl 8boLtI the thanty's pnntypal sour¢e5 01 funds Iinthding aDy fundfaisingl. how exp•ndrtur• h43 supported th¥ key obpcts'ves ol the ¢hanty. Investm•nl poliw and obi•cli¥e5 Ind￿d￿9 any ethical Investrrnl policy adopl•d. Section F Other optional information Section G Declaration Th8 irust•es d•cL4r• ttwt they apprO￿d th• try$ts•s' rnpofl ibow. Sign•d on b•h•W of ih• ¢h•dty• Ir￿t• SignatUf•lJl Bnan Keilh Roulledgo Tnjslee A¢bn Position leg S¥¢T•l•ry, Ch4ir. •te} Trea￿re TeL)STÉÉ D•1• 02 October 2022 TAR 1011

PHUK Income and expenditure 2021 Income Grants £13.483,00 Virgin Money Giving £12.525,14 Donations £5.894,64 Facebook £1.453,27 HMRC £551,40 Benevity £144,68 Amazon Smile £73,43 Stripe £54,84 Give As You Live £50,00 Everyclick £31,72 Nationwide Interest £121,20 Total Income £34.383,32 Expenditure C. Rastin £5.169,00 Software £945,60 J.Mcpherson £920,00 Publishing/printing £907,16 Laptop £798,00 Subscriptions £437,52 Insurances £296,24 Phones £202,32 Printer £183,90 London Marathon £179,00 Banner £146,40 Office costs £141,52 Office supplies £119,22 Webhosting/App £114,40 Poster £72,00 Seminars/webinars £28,00 Expenses £16,05 Fees £8,14 Total £10.684,47 Total surplus £23.698,85 External Giving Grant to Professor £0,00 Grant to research body £0,00 Total External Giving £0,00 Net Surplus/Deficit £23.698,85	PHUK Income and expenditure 2021 Income Grants £13.483,00 Virgin Money Giving £12.525,14 Donations £5.894,64 Facebook £1.453,27 HMRC £551,40 Benevity £144,68 Amazon Smile £73,43 Stripe £54,84 Give As You Live £50,00 Everyclick £31,72 Nationwide Interest £121,20 Total Income £34.383,32 Expenditure C. Rastin £5.169,00 Software £945,60 J.Mcpherson £920,00 Publishing/printing £907,16 Laptop £798,00 Subscriptions £437,52 Insurances £296,24 Phones £202,32 Printer £183,90 London Marathon £179,00 Banner £146,40 Office costs £141,52 Office supplies £119,22 Webhosting/App £114,40 Poster £72,00 Seminars/webinars £28,00 Expenses £16,05 Fees £8,14 Total £10.684,47 Total surplus £23.698,85 External Giving Grant to Professor £0,00 Grant to research body £0,00 Total External Giving £0,00 Net Surplus/Deficit £23.698,85	HSBC Current 01/01/2021 £9.938,01 61714589 31/12-/021 £28.515,66 Year change £18.577,65 Nationwide Saver 7 01/01/2021 £5.000,00 90162936 31/12-/021 £5.000,00 Year change £0,00 Nationwide 45 Saver 01/01/2021 £10.425,00 90162944 31/12/2021 £15.546,20 Year change £5.181,20 HSBC NWS7 NW45 31/12/2021 £28.515,66 £5.000,00 £15.546,20 01/01/2021 £9.938,01 £5.000,00 £10.425,00 Year change £18.577,65 £0,00 £5.121,20 Total £49.061,86 £25.363,01 £23.698,85
	2021
Income Grants Virgin Money Giving Donations Facebook HMRC Benevity Amazon Smile Stripe Give As You Live Everyclick Nationwide Interest	£13.483,00 £12.525,14 £5.894,64 £1.453,27 £551,40 £144,68 £73,43 £54,84 £50,00 £31,72 £121,20
Total Income	£34.383,32
Expenditure C. Rastin Software J.Mcpherson Publishing/printing Laptop Subscriptions Insurances Phones Printer London Marathon Banner Office costs Office supplies Webhosting/App Poster Seminars/webinars Expenses Fees	£5.169,00 £945,60 £920,00 £907,16 £798,00 £437,52 £296,24 £202,32 £183,90 £179,00 £146,40 £141,52 £119,22 £114,40 £72,00 £28,00 £16,05 £8,14
Total	£10.684,47
Total surplus	£23.698,85
External Giving Grant to Professor Grant to research body Total External Giving	£0,00 £0,00 £0,00
Net Surplus/Deficit	£23.698,85

Independent examiner's report on the accounts

Section A Independent Examiner’s Report

Report to the trustees/ Charity Name members of Pitt Hopkins UK

On accounts for the year Charity no ended Dec 31st 2021 (if any)

Set out on pages

(remember to include the page numbers of additional sheets)

I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended DD / MM / YYYY 31/12/2021 .

• Responsibilities and As the charity trustees of the Trust, you are responsible for the preparation basis of report of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”).

I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed 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 (other than that disclosed below *) in connection with the examination which gives me cause to believe that in, any material respect:

• accounting records were not kept in accordance with section 130 of the Act or

• the accounts do not accord with the accounting records

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached.

• Please delete the words in the brackets if they do not apply.

Signed: Date: 14th July 2022

Name: Michael Waters C.Eng., FIMMM

Relevant professional qualification(s) or body (if any):

Address: 22 Willowmead Drive, Prestbury Cheshire SK10 4BU

October 2018

1

IER

Section B Disclosure

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

Give here brief details of any items that the examiner wishes to disclose .

Nationwide have not provided year end statements, only disclosing latest changes to the accounts, which have been taken as year end.

October 2018

2

IER