Trustees. Annual Report for the period Period start date PenL¥A end dale From b. Section A details Reference and administration #. Charlty name Pitt Hopkins UK Other names charlty Is known b Registered charity number (Ir any) 1167153 Charitys princlpal address 76 Auckiand Road Ilford Essex IG14SF Names of the charity trustee5 who manage the charity Trust86 namo L)at•s acted If not for whol8 Nam• ol person lor body entitled to appolnt trustee Itf Om¢o111 any) Sue Routledge Brian Roulledge Leanne Groves Chair Julre Cooper Melissa Stewart Maryrose Brennan Graham Fiveash From 11-04-22 onwards From 07-11-22 onwards TreasU￿r Debbie Bromley 01-01-2022- 15-0&22 10 11 12 13 14 15 16 17 18 19 TAR Ma￿h 2012 20 Names of the trustees for the charity. if any, Ifor example. any custodian trustees) Name Dates acted If not for whole ear Names and addresses of advisers Ioptlonal informatlon) b. Type of Name Address adviser Name of chief executive or names of senior taff members (OptDonal inforniation b. Section B Structure, overnance and mana ement Description of the charltys trusts Type of goveming dLKument Written constitution How the charity is constituted cio Trustee selection methods Appointed by trustees Additlonal governance issues {Optional *fomiallon) You may choose to include additional information, where relevant, about.. Debbie Bromley stepped down from being a trustee, after Ihree-year term5. policies and proCedU￿S adopted for the induction and training of Irustees: the charity's organisalional structure and any wider network with which the charity Maryrose Brennan became a trustee in April 2022. Graham Fiveash took over as Treasuror in October 2022. relationship with any related parties., trustees, cL)nsideralion of major risks and Ihe system and procedures lo manage them. TAR March 2012 Section C Ob'ectives and activities 1.Raising awareness of Pitt-Hopkins syndrome for the public. 2. Supporting families by providing information and funding to facilitate opportunities to meet. 3 Making contact wit￿. medical and social professionals. 4. Funding research Summary of the objects of the charity set out in its governing document Continyg support of research by Professor Smidt, Amsterdarn. PrEparalion of a siM￿e parent-friendly guide to the recommendations of the 2018 consensus statement started. Ongoing rnaintenan￿ and ifflprovement of the Pitt Hopkins UK website and mrtjile phone app. Participation as an elected patient advocale in the ePAG (patient advocacy group) for ERN (European Reference Nefv40rk) ITHACA Summary of the maln 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 tho Charity Commission on public benefit) Working wtth medical professionals with the Patienl Led Research Hub (PLRH) in Cambridge Taking part in on-going free training on running a small charity online and in-person. Repreyting Pitt Hwkins UK at meetings and events. Improvement of charity govemance. l activities have been undertaken with due regard to the guidance issued to trustees by the Charity Commission on public benefit. Addltional detalls of objecllves and actlvlties (Optional infomiation) You may choose to include further slalements, vthere relevant, about.. Pitt-Hopkins mobile phone app management provided by a volunteer. policy on grantmaking. policy programme related investment- Ongoing redesign of the website has been provided pro bono by one of the trustees contribution made by volunteers. Nathan Routledge acted as a scientific advisor. TAR MaTch 2d12 Section D Achievements and performance Summary of the main achievements of the charity during the year Raisin Awarenosslsu The charity continued to disseminate information and provide SLSPPOrt to parents and families via dedicated support groups (Google, Facebook), Skype phone line, website, app. ￿)Cial media, e-mail and personal contacts. Work started on producing a simple parenl-friendly guide lo the recommendations of the 2018 consensus statement. An infomial gathering of some families tLK)k place in Burgess Hill in cktober 2022. s in previous years, FacetrKx)k Profile photos for use on Pitt-Hopkins Awaren ss Day (SeptemtEr 18) were prepared. An Awareness Day campaign video was also produ￿. The Charity continued to work with the Cambridge Rare Disease Network (CRDN). Beacon Ifomially Findacurel, EURORDIS, Genetic Allian￿ UK. Canva and Rare Revolutionaries. Advice sought fcf parents from the doctors at the Dutth Pitt-Hopkins clinic via email. Working with medical professionals with the Patient Led Research Hub (PLRH) in Carnbridge Conlact was made with BNI. a netsvorking organisation which resulted in some pro bono work on an IT problem. Administration The truslees met six ts'mes during the year, the meetings being held on-line. The AGM was held (on-line) in December 2022. Charity poliues Complaints, Equal OprKJrtunities. Finance and Safeguarding were reviewed and agreed. A virtual assistant to support the Chair with administration tasks e.g. newsletter was found. The Chair, as an ePAG advocate and an elected member of the patient board for ERN ITHACA participated in online training courses. The free Pitt Hopkins UK mobile app was r8Mewed and updatinglredesign of the website continued. Finance undraisin The income stream in 2022 came from individual donations and FacebcM)k and C ve As You Live re-imbursements generated by numerous fundraising efforts including long distance running, cycling and walking events and sales of T-shirts. TAR March 2012 Section D Achievements and performance An applicab'on for a grant from Pears Foundation was not successful this year. The charity supported a runner in the London Maralhon in October. A search for savings accounts having a better rdte of interest than the p￿sent accounts was iniliated. In December, the Amsterdam research group contacted the charity to say I thal the 2022 reFQrt of the research progress V￿uld be sent in January 2023 Ongoing work wi•h the PLRH on the arionymised data from the family registry which VRS launche(l in 2021. Meetings with medical professionals and researchers who are experts in Rett syndrome which can be a differential diagnosis to PTHS looking at how we can apply for funding for research into the breathing anomalies. The charity met wth Aspire BiosCief￿es. TAR arch 2012 Section E Financial review Brlef statement of the Charity's policy on reserves £50(K) held as reserve Detalls of any funds materially In deficit None Further financial review details {Optional inforniation) You may Ch¢￿$8 lo 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., inveslmenl policy and objectives induding any ethical inveslmenl policy adopted. c. Section F Other optional information Section G Declaration The trustees declare that they have approved the trustees report above. Signod on behalf of the charity's trustees Signature{s Full name(s) Susan Routledge Brian Keith Routledge TAR March 2Q12 Position (eg Secretary. Chair. ètc Chair Date 9 October 2023 19, October 2023 TAR Marth 2012 ||**Jan**
**Feb**
**Mar**
**Apr**
**May**| |---|---| |**Cash b/f**|**28.516**
**£**
**29.811**
**£**
**28.086**
**£**
**25.186**
**£**
**26.011**
**£**| |Zoom
Bank fee
ICO
Bank charges
Fundraising
Wooler
Charlotte Rastan
Debbie Bromley
Jo McPherson
PolicyBee
Appy Pie
GAUKL
Skype
IT
NRG Collective
Workwear
FB charges
Diane Trill
Texthelp
Caroline Payne
Mirren Thompson
Donation
Give as you live
Amazon core
PolicyBee
J Cooper
FB
Deposit interest|142
£
4
£
2
£
35
£
6
£
6
£
5
£
5
£
5
£
50
£
30
£
900
£
3.100
£
84
£
230
69
£
546
£
57
£
50
£| ||**237**
**£**
**1.796**
**£**
**3.233**
**£**
**5**
**£**
**55**
**£**| ||| ||**Jan**
**Feb**
**Mar**
**Apr**
**May**| ||
20
£
20
£
20
£
20
£
20
£
1.496
£
40
£
535
£
16
£
756
£
655
£
51
£
26
£
273
£
54
£| ||**1.532**
**£**
**71**
**£**
**333**
**£**
**830**
**£**
**1.236**
**£**| ||| |**Cash c/f**|**29.811**
**£**
**28.086**
**£**
**25.186**
**£**
**26.011**
**£**
**27.191**
**£**| **NW Issue 7 ######## NW 45 day £ 5.000,00** |**Jun**
**Jul**
**Aug**
**Sep**
**Oct**
**Nov**
**Dec**|**2022 Total**| |---|---| |**27.191**
**£**
**30.684**
**£**
**39.072**
**£**
**42.743**
**£**
**46.045**
**£**
**51.427**
**£**
**56.346**
**£**|| |5
£
5
£
5
£
5
£
5
£
5
£
6
£
202
£
60
£
16
£
64
£
65
£
718
£
12
£
6
£
6
£
6
£
244
£
992
£
260
£|**142**
**£**
**5**
**£**
**35**
**£**
**63**
**£**
**50**
**£**
**30**
**£**
**4.000**
**£**
**84**
**£**
**299**
**£**
**546**
**£**
**57**
**£**
**50**
**£**
**202**
**£**
**140**
**£**
**65**
**£**
**718**
**£**
**30**
**£**
**244**
**£**
**992**
**£**
**260**
**£**| |**5**
**£**
**267**
**£**
**5**
**£**
**800**
**£**
**255**
**£**
**27**
**£**
**1.328**
**£**|**8.013**
**£**| ||| |**Jun**
**Jul**
**Aug**
**Sep**
**Oct**
**Nov**
**Dec**|**Total**| |20
£
20
£
20
£
20
£
20
£
20
£
20
£
195
£
65
£
76
£
700
£
2.267
£
300
£
1.000
£
3.283
£
8.570
£
3.564
£
2.415
£
3.176
£
4.499
£
450
£
16
£
24
£
648
£
10
£
319
£
164
£
103
£
104
£|**240**
**£**
**6.674**
**£**
**27.384**
**£**
**117**
**£**
**273**
**£**
**658**
**£**
**689**
**£**| |**3.498**
**£**
**8.655**
**£**
**3.675**
**£**
**4.102**
**£**
**5.637**
**£**
**4.946**
**£**
**1.574**
**£**|**36.088**
**£**| ||**-**
**£**
**-**
**£**
**-**
**£**| |**30.684**
**£**
**39.072**
**£**
**42.743**
**£**
**46.045**
**£**
**51.427**
**£**
**56.346**
**£**
**56.592**
**£**|**56.592**
**£**| |**Gain/loss**|| ||**28.076**
**£**| **######## £ 5.000,00** |**I+E**|**2022**||**BS 2022**|**BS 2022**| |---|---|---|---|---| |||**b/f**|**£**|**49.061,86**
| |||**c/f**|**£**|**77.137,74**
| **£ 8.012,58 £ 36.088,46** Gain **£ 28.075,88 £ 28.075,88** Current plus deposit accounts Current plus deposit accounts Change in cash ## **Independent examiner's report on the accounts** **Section A Independent Examiner’s Report** **Report to the trustees** Charity Name Pitt Hopkins UK **On accounts for the year Charity no ended** Dec 31 2022 **(if any)** 1167153 **Set out on pages** (remember to include the page numbers of additional sheets) **Report to the trustees** I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended **DD / MM / YYYY** 31/12/2022 . **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 (“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 all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. - **Independent** [The charity’s gross income exceeded £250,000 and I am qualified to XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX - **examiner's statement** XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXundertake the examination by being a qualified member of [insert name of XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXapplicable listed body]]. _Delete_ [ ] _if not applicable._ I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination (other than that XXXXXXXXXX XXXXXXXXXXXdisclosed below *) 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 concerning the form and content of 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 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. * _Please delete the words in the brackets if they do not apply._ **Signed: Date:** 7/9/2023 **Name:** Michael Waters **Relevant professional qualification(s) or body** C.Eng, FIMMM **Oct 2018** 1 **IER** ## **(if any):** **Address:** 22 Willowmead Close, Prestbury SK10 4BU ## **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 examiner wishes to disclose** . **Oct 2018** 2 **IER**