||**Trustees' Annual Report**|**Trustees' Annual Report**|**Trustees' Annual Report**|**Trustees' Annual Report**|**Trustees' Annual Report**|**for theperiod**|**for theperiod**|**for theperiod**| |---|---|---|---|---|---|---|---|---| ||**From**|Period start date||||Period end date||| |||Day
01|Month
January|Year
2023||**b.**
Day
31|Month
December|Year
2023| ## **b.** Section A Reference and administration details **Charity name** Pitt Hopkins UK **Other names charity is known by** **Registered charity number (if any)** 1167153 **Charity's principal address** 76 Auckland Road Ilford Essex IG1 4SF **a. P** ||||| |---|---|---|---| ||||| ||||| |**a.**||**b.**|| |**P**|||| **Names of the charity trustees who manage the charity** |1
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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 (if**
**any)**| |---|---|---|---|---| ||Sue Routledge|Chair||| ||Brian Routledge|||| ||Leanne Groves|||| ||Julie Cooper|||| ||Melissa Stewart|||| ||Maryrose Brennan|||| ||Graham Fiveash|Treasurer||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| **Names of the trustees for the charity, if any, (for example, any custodian trustees)** March **2012** **TAR** 1 **Name Dates acted if not for whole year** ## **Names and addresses of advisers (Optional information)** **b. Type of Name Address adviser c. d. e. f. Name of chief executive or names of senior staff members (Optional information)** ## **b. Section B Structure, governance and management** ## **Description of the charity’s trusts** Type of governing document[Written constitution] - (eg. trust deed, constitution) How the charity is constituted (eg. trust, association, company)[CIO] Trustee selection methods - (eg. appointed by, elected by)[Appointed 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. ## **Section C Objectives and activities** March **2012** **TAR** 2 |**Summary of the objects of the**
**charity set out in its**
**governing document**
**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**
You**may choose**to include
further statements, where
relevant, about:

policy on grantmaking;

policy programme related
investment;

contribution made by
volunteers.|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 with medical and social professionals.
4. Encouraging research| |---|---| ||Face to face contact in November with Professor Smidt, Amsterdam.
Continuing work on producing a simple parent-friendly booklet to the
recommendations of the 2018 consensus statement.
Ongoing maintenance and improvement of the Pitt Hopkins UK website
and mobile phone app.
Participation as an elected patient advocate in the ePAG (patient
advocacy group) for ERN (European Reference Network) ITHACA
Working with medical professionals with the Patient Led Research Hub
(PLRH) in Cambridge
Taking part in on-going free training on running a small charity online and
in-person.
Representing Pitt Hopkins UK at meetings and events e.g. RAREsummit
2023.
Improvement of charity governance.
Two newsletters were published
All activities have been undertaken with due regard to the guidance
issued to trustees by the Charity Commission on public benefit.| ||**and activities (Optional information)**| ||Pitt-Hopkins mobile phone app management provided by a volunteer.
Ongoing redesign of the website has been provided pro bono by one of
the trustees with input from the chair
.
Nathan Routledge acted as a scientific advisor.| March **2012** **TAR** 3 a. Section D Achievements and performance ## **Summary of the main achievements of the charity during the year** ## **Raising Awareness/Support** The charity continued to disseminate information and provide support to parents and families via dedicated support groups (Google, Facebook), Skype phone line, website, app, social media, e-mail and personal contacts. Work continued on producing a simple parent-friendly booklet to the recommendations of the 2018 consensus statement. An informal gathering of some families took place in Nuneaton in May 2023. For Pitt-Hopkins Awareness Day (18[th] September), Facebook Profile photos were prepared. An Awareness Day campaign slideshow was also produced. The Charity continued to work with the Cambridge Rare Disease Network (CRDN), Beacon (formally Findacure), EURORDIS, Genetic Alliance UK and Rare Revolutionaries. Advice sought for parents from the doctors at the Dutch Pitt-Hopkins clinic via email. Working with medical professionals with the Patient Led Research Hub (PLRH) in Cambridge Chat magazine had an article on the sibling of someone with Pitt-Hopkins syndrome. Two newsletters were produced. Banners and business cards designed and purchased. **Administration** The trustees met three times during the year, the meetings being held on-line. The AGM was held (on-line) in October 2022. The charity policiy on Finance was further reviewed and agreed. 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 reviewed, and updating/redesign of the website continued. Planning for a face-to face meeting of trustees in Spring 2024 was started. **Finance/Fundraisinq** March **2012** **TAR** 4 a. Section D Achievements and performance The income stream in 2023 came from Gift Aid, individual donations and Facebook and Give As You Live re-imbursements generated by numerous fundraising efforts including long distance running, (Manchester 10K, London Half Marathon, iRun Gatwick 10K, Cardiff Half Marathon), cycling and walking events and sales of T-shirts. A search for savings accounts having a better rate of interest than the present accounts was continued. ## **Research** The 2022 report from the Amsterdam research group was received in January 2023 Work with the PLRH on the anonymised data from the family registry, which was launched in 2021, continued. ## **Section E Financial review** ## **Brief statement of the** **charity’s policy on reserves** £5000 held as reserve **Details of any funds materially** None **in deficit 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. **c. Section F Other optional information** March **2012** **TAR** 5 ## **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)**
**Position (eg Secretary, Chair,**
**etc)**
**Date**||| |---|---|---| ||Susan Routledge|Brian Keith Routledge| ||Chair|| ||08 October 2024|08 October 2024| March **2012** **TAR** 6 G. J. Fiveash 10/0112024 Pitt Hopkin5 UK Final Income & Expenditure Comparison Statement January to Deeember 2023 Jan to Dec 2023 £o.c Donations & Income 4010- Virgin faoney 4020- Facebook Jan to Dec 2022 £0. £779.41 £496.94 4030- Give A5 You Llve £6.444.84 £5.197.09 £240.IX) £8,183.41 £0. £240. 4040.Gift 4050- Mirren Thompson 4060- Stripe 4070- Arnazon Sfnile £o.c¥) £112.50 £o.c £5.095.18 7.240. £0. £46.25 £19.180.17 £116.71 £o.co £6.940.15 £0. 40EO- Pears Grant 4050. Orher Donations 41￿-The APAX Foundation 4120-Tee Shirt Incorne thher income £657.90 £0. Total Incorne £25,155.27 £35.815.28 Direct Expenses S￿5-v1rgiD Fees 5CM)8- Stripe Fee5 5030- C05t of PTH5Tee Shirts 5040- Cost5 of Fund Raising S060- PTHSSponsored Events Total Direct Expenses GROSS INCOME / LOSS Expenditure- Overheads 6lJJ)- Marketing £o.o) £0. £o.c £o.cx) £90.C*) £0. £220.1Xs £717.76 £328.82 £o.tsJ £310. £1,046.58 £34,768.70 £24.845.27 £62.47 £o.cx) 74W-Tr•v•llini £222_97 £o.o) 741X)- Conference Expenses £114.32 £0. 7420- Hotel and kcommodation £iso. £o.¢J) 750)- Printing 7510- Postage and Ca￿l3£e 7530-Telephone 7540- Web Site Hosting & Development 7550- Cornputer & Software 7620- Consultancy & Profe55ional Fee5 7630- Business Insurance £74.99 £21.68 £0. £o.c £202.32 £275.03 £153.98 £385.C¥) £273.18 £0. £75.98 £1.457.40 £4.673.CKI £273.18 79W- Bank CharEe5 and Interest 8030- Office Equiprnent and IT Depreciation 8210- Subscriptions £88.31 £o.c¥) £135. £98.26 1.212.16 £115.OJ Total Overhead5 NET INCOME / LOSS £2,159.25 £22.686.02 £7,904.98 £26.863.72 **----- Start of picture text -----**
Donations & Income 2022
4020 - Facebook
£657.90 £496.94
4030 - Give As You LIve
4050 - Mirren Thompson
£116.71 4060 - Stripe
£6,940.15 £8,183.41 £240.00 4070 - Amazon Smile
4090 - Other Donations
4120 - Tee Shirt Income
£19,180.17
**----- End of picture text -----**
2 Pitt Hopkins UK Finalised Assets & Liabilities Statement To 31st De¢ember2023 ASSErs Fixed Assets Total Fixed Assets £0.00 Current Assets I￿)- Pitt Hopkins UK 1230- Nationwide 45 Day Saver 1240- Nationwide Instant Acces5 Account 29,277.56 65,546.20 5.IXM).(K) Total Current Assets £99,823.76 £99,823.76 TOTAL ASSErs LIABILITIES Curront Liabilities £5.IKKI.(M) Total Current Liabilities £5,000.00 Future Liabilities Total Future Liabilities £0.00 TOTAL LIABILITIES £5,000.00 TOTAL NEf ASSErs £94.823.76 -------------------------------------------------------------------------------------------------------------------------------------- 4 ## **Independent examiner's report on the accounts** **Section A Independent Examiner’s Report** |**Report to the trustees**
**On accounts for the year**
**ended**
**Set out on pages**
**Responsibilities and**
**basis of report**|Charity Name
Pitt Hopkins UK|Charity Name
Pitt Hopkins UK|Charity Name
Pitt Hopkins UK| |---|---|---|---| ||||| ||Dec 31 2023|**Charity no**
**(if any)**|1167153| ||||| ||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
charity (“the Trust”) for the year ended 31/12/2023.
As the charity's trustees, you are responsible for the preparation 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 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 **examiner's statement** undertake the examination by being a qualified member of [insert name of applicable 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 disclosed below *) which give 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._ **Date:** 26/08/2024 **Signed: Name:** Michael Waters **Relevant professional** C.Eng., FIMMM **Oct 2018** 1 **IER** **qualification(s) or body (if any):** **Address:** 22 Willowmead Drive, 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** The two Nationwide accounts containing the bulk of the charity’s funds were **any items that the** only available for inspection up to 1/10/23 and 21/7/23 respectively. **examiner wishes to disclose** . The accountant has explained to me that statements are only issued once per year on these accounts so the balance shown in October on the 45 day account and the balance in July on the instant saver account are the same as the December year-end balances. I have taken this statement on trust. **Oct 2018** 2 **IER**