## **Trustees' Annual Report for the period** Period start date Period end date Day Month Year Day Month Year **From** 01 January 2024 31 December 2024 ## **b.** Section A Reference and administration details **Charity name Other names charity is known by Registered charity number (if any)** 1167153 **Charity's principal address** 76 Auckland Road Ilford Essex IG1 4SF ## Pitt Hopkins UK ## **Names of the charity trustees who manage the charity** |1
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19|**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||| ||Mark Haywood||15/1/2024|| ||Debbie Bromley||15/1/2024|| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| March **2012** **TAR** 1 **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)** ## **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 CIO (eg. trust, association, company) Trustee selection methods Appointed by trustees (eg. appointed by, elected by) ## **Additional governance issues (Optional information)** You **may choose** to include Trustee Face to Face meeting held in. April 2024 (see Section D) 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. March **2012** **TAR** 2 ## **Section C Objectives and activities** |**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)**|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| |---|---| ||Continuing support of research by Dr. Simone Mesman, Amsterdam.
Ongoing maintenance of mobile phone app.
Creation of new Pitt Hopkins UK website.
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.
Pitt Hopkins UK represented at various meetings and events e.g. Genetic
Alliance UK monthly online meeting, response to Downs Syndrome Act.
etc
Improvement of charity governance.
All activities have been undertaken with due regard to the guidance
issued to trustees by the Charity Commission on public benefit.| ## **Additional details of objectives and activities (Optional information)** You **may choose** to include further statements, where Pitt-Hopkins mobile phone app management provided by a volunteer. relevant, about: • policy on grantmaking; policy on grantmaking; • policy programme related policy programme related Ongoing redesign of the website has been provided pro bono by one of the trustees. investment; . - policy on grantmaking; policy on grantmaking; • policy programme related policy programme related investment; - contribution made by volunteers. 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. The trustees explored the possibility of organising a weekend for families through the Barretstown residential centre in Ireland or at a Horse Riding Centre for the Disabled in North Wales. Further discussions about facilities and dates (2025) are ongoing. An informal gathering, arranged at short notice, of some families took place in Solihull in October 2024. A collage for Pitt-Hopkins Awareness Day (18[th] September) was constructed for use online. The Charity continued to work with the Cambridge Rare Disease Network (CRDN), Beacon, EURORDIS, Genetic Alliance UK. Canva and Rare Revolutionaries and other relevant groups. Doctors at Amsterdam Medical Centre were contacted via email for help about questions and information wanted by parents. Working with medical professionals with the Patient Led Research Hub (PLRH) in Cambridge. Two trustees took part in the parliamentary lobbies on Rare Disease Day (28/02/24) at Westminster and Edinburgh. A player at Irchester United FC was sponsored by a parent to raise awareness of Pitt-Hopkins syndrome. **Administration** Mark Haywood and Debbie Bromley joined as trustees in January. The trustees met five times during the year, four meetings being held on-line and a face-to-face meeting was held in April 2024 in Rochester, Kent. The AGM was held (on-line) in December 2024. The charity policy on finance was reviewed and agreed. The Chair, as an ePAG advocate and an elected member of the patient board for ERN ITHACA attended board meetings and participated in online training courses. The free Pitt Hopkins UK mobile app was reviewed and design of the new website continued. A pop-up tent and small PA system were bought for use at family gatherings March **2012** **TAR** 4 a. Section D Achievements and performance **Finance/Fundraisinq** The income stream in 2024 came from individual donations, grants and Facebook and Give As You Live re-imbursements generated by numerous fundraising efforts e.g. Manchester 10K, Wing Walking and a mother in Ireland who climbed 40 peaks in Ireland. Funds were also generated from sales of T-shirts. A new savings account with HSBC was opened and funds transferred. The funding platform Wonderful was trialled. It was agreed to investigate how to set up a lottery in aid of the charity. **Research** The Amsterdam research group contacted the charity to say that the 2023 report of the research progress would be sent in January/Early 2024. The final payment of the contract will be paid in early 2025. Ongoing work with the PLRH on the anonymised data from the family registry which was launched 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. A statistician was helping analyse data held by the charity. **Notes on Trustee Face to Face meeting, April 2024, Rochester, Kent** Discussion on a) use of social media b) identifying geographical location, by postcode, of families to aid in organising local events and connecting families. c) re-assessing fund raising platforms used in view of high fees charged. d) ideas for use of accumulated funds e) merchandising of items from Simply Logo. f) succession planning and search for new trustees. g) demonstration of planned new website. March **2012** **TAR** 5 a. Section D Achievements and performance March **2012** **TAR** 6 ## **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** ## **Section G Declaration** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** **----- Start of picture text -----**
Signature(s)
**----- End of picture text -----**
**----- Start of picture text -----**
Brian Keith Routledge
Full name(s) Susan Routledge
**----- End of picture text -----**
March **2012** **TAR** 7 |**Position (eg Secretary, Chair,**
**etc)**
**Date**|

Chair|Trustee| |---|---|---| ||11thOctober 2025
11hOctober 2025|| ||11thOctober 2025|| March **2012** **TAR** 8 ## **Pitt Hopkins UK** ## **Final Income & Expenditure Comparison Statement** _**January to December 2024**_ |**Pitt Hopkins UK**
**Final Income & Expenditure Comparison Statement**
**_January to December 2024_**|**Pitt Hopkins UK**
**Final Income & Expenditure Comparison Statement**
**_January to December 2024_**|**Pitt Hopkins UK**
**Final Income & Expenditure Comparison Statement**
**_January to December 2024_**|**Pitt Hopkins UK**
**Final Income & Expenditure Comparison Statement**
**_January to December 2024_**| |---|---|---|---| |**Donations & Income**|**Jan to Dec 2024**|**Jan to Dec**
**2023**|* see note 1
*see note 2
* see note 3
*see note 4
*see note 5
*** see note 6**
*see note 7| |4020 - Facebook
4030 - Give As You LIve
4040 - Gift Aid
4050 - Mirren Thompson
4060 - Stripe
4045 - Wonderful
4070 - Amazon Smile
4090 - Other Donations
4900 - Other income|£1,308.14
£18,959.23
£2,128.73
£240.00
£5,869.44
£2,010.00
£0.00
£3,834.97
£122.53|£779.41
£6,444.84
£5,197.09
£240.00
£0.00
£0.00
£112.50
£5,095.18
£46.25|| |**Total Income**|
**£34,473.04**|**£17,915.27**|| |**Direct Expenses**|||| |5025 - University of Amsterdam
5030 - Cost of PTHS Tee Shirts
5060 - PTHS Sponsored Events
5070 - PTHS Sponsored Family Meeting Events
5500 - Marketing
5600 - Conference Expenses|£5,017.00
£0.00
£420.00
£758.79
£627.93
£1,577.82|£0.00
£90.00
£220.00
£0.00
£62.47
£114.32|| |**Total Direct Expenses**|
**£8,401.54**|**£486.79**|| |**GROSS INCOME/ LOSS**|
**£26,071.50**|**£17,428.48**|| |**Expenditure - Overheads**|||| |7050 -Other Expenses
7400 - Travelling
7420 - Trustee Expenses
7500 - Printing
7510 - Postage and Carriage
7530 - Telephone
7540 - Web Site Hosting & Development
7550 - Computer & Software
7620 - Consultancy & Professional Fees
7630 - Business Insurance
7900 - Bank Charges and Interest
8010- Office Equipment & IT Depreciation
8210 - Subscriptions|£15.00
£249.45
£1,768.58
£0.00
£8.15
£202.32
£66.00
£2,528.33
£210.00
£284.39
£144.55
£29.99
£234.20|£0.00
£222.97
£150.00
£74.99
£21.68
£202.32
£275.03
£153.98
£385.00
£273.18
£88.31
£0.00
£135.00|| |**Total Overheads**|
**£5,740.96**|**£1,982.46**|| |**NET INCOME/ LOSS**|
**£20,330.54**|**£15,446.02**|| ## **Pitt Hopkins UK Finalised Assets & Liabilities Statement** _**To 31st December 2024**_ |**Pitt Hopkins UK**
**Finalised Assets & Liabilities Statement**
**_To 31st December 2024_**|**Pitt Hopkins UK**
**Finalised Assets & Liabilities Statement**
**_To 31st December 2024_**|**Pitt Hopkins UK**
**Finalised Assets & Liabilities Statement**
**_To 31st December 2024_**| |---|---|---| |**ASSETS**||| |**Fixed Assets**
~~OO~~|~~OO~~|~~OO~~| |~~OO~~|**Total Fixed Assets**
~~OO~~|**£0.00**
~~OO~~| |**Current Assets**
~~GO~~|~~GO~~|~~GO~~| |**1200 - Pitt Hopkins UK**
~~a~~|**49,608.10**|| |**1230 - Nationwide 45 Day Saver**
~~a~~|**66,854.00**|| |**1240 - Nationwide Instant Access Account**
~~a~~|**5,096.58**|| |***Interest Receivable**
~~a~~|**1,679.72**|| |~~OC~~|**Total Current Assets**
~~OC~~|**£123,238.40**
~~OC~~| ||**TOTAL ASSETS**|**£123,238.40**| |**LIABILITIES**||| |**Current Liabilities**
~~eG~~|~~eG~~|~~eG~~| |~~GG~~|~~GG~~|~~GG~~| |**Future Liabilities**
~~ee~~|~~ee~~|~~ee~~| |~~eG~~|**Total Future Liabilities**
~~eG~~|**£0.00**
~~eG~~| ||**TOTAL LIABILITIES**|**£0.00**| |~~a~~|~~a~~|~~a~~| ||**TOTAL NET ASSETS**|**£123,238.40**| _*** Note: This represents 9 months interest (APR to DEC 2024) on the £66,854.00 that has been earned on the Nationwide 45 Day Saver Account.**_ Pitt Hopkins UK PROPOSED BUDGET January to December 2025 In¢ornE Jir DDn atiDn5 £12. £2,(KK £2,(X￿> £0 40JIJ-GiftAid 4110- IntBrB5t Earn&d 4120-Tee5hirtln£om Budgetted Incorne £16.(XXI Jan to Dec 2025 5èD&)- PTH55pDn3Dred Events 5070- wtHSSF￿￿sDr￿d Fa mily m￿￿tIng Ev8nts s5￿- fvla rkEtirrg sE￿￿- CDnference LYpon5Q5 £ i.(Kx>.(x> £6￿. Budgetted tArert Expenses £3.71XI (h￿rheadS 74(X>- TravEI l i ng 7420-Tru5te& Expenses 75￿-PrIntIng 7510- PD5tagB a nd Carriag 7510-TEI ephone 7940-WLLbSit& H05ting & D&v&loprnent 7550-CornputEr & 3Dfrware 7620-Con5ultancy & PrDf255ional Fees 7 6£0- Busi n @551 n5ura ni Jan to Dec 2025 £250 £1,8 £1 £2(￿) £1 £1,5 £2 £z(K> ££(￿1 79W- BankCharg25 and Interest B210-SubscriptlDnS £150 £2fyJ Budgetted (knyheads £5.1 ## **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** Dec 31 2024 **Charity no** 1167153 **ended (if any) Set out on pages** 1-4 of the accompanying document (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 **31/12/2024** - **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._ **Date:** 16/4/25 **Signed:** ~~wee TT~~ **Name:** Michael Waters ~~Cs~~ **Relevant professional** C.Eng., FIMMM **qualification(s) or body (if any): Address:** 22 Willowmead Drive, Prestbury 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** For administration reasons, the deposit accounts only show the balance as at **any items that the** 31/3/2024. **examiner wishes to disclose** . **October 2018** 2 **IER**