PTEN UK and Ireland Patient Group Charity Number:1172205 Trustees, Annual Report & Financial Statements Year ended 31 December 2024
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 Contents Page Number Tru5tees' Annual Report Independent Examinerfs Report on the Financial Statement5 Financial Ststements comprising: Statement of Financial Activities Balance Sheet Notes 10-13
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financlal Statements For year ended 31 December 2024 Charity Number 1172205 Trustees. Annual Re ort The Trustees present their report with the financial statements of the charity for the year ended 31 December 2024. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statements of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland {FRS 1021. OBJECTIVES ANO ACTIVITIES Aims and charltable objectives The purpose of our patient group 15 to improve the lives of patients. parents and carers of all ages, in the United Kingdom and Ireland, who are affected by rare PTEN genetic alterations, PTEN Hamartoma Tumour Syndrome IPHTS), Cowden Syndrome ICS), or Bannayan-Riley-Ruvalcaba Syndrome {BRRSI through better patient 5UPPOrt, increased awareness, more accurate and accessible information, earlier diagnosis and intervention, greater research into treatment and prevention, and improved coordination of care. Publlc Benefit In planning our activities, we keep in mind the Charity Commission guidance on Public Benefit. We do this by our acce55ible awareness resources to the 8eneral pub5ic and the design of our support activitie5 to ensure that all beneficiaries are able to access support no matter their age, location and economic circumstance5 to support our charitable objectives. ACHIEVEMENTS AND PERFORMANCE In 2024 our focus was on continuing to provide vital emotional, practical. and financial support to our community while also raising awareness of PTEN. Due to the economic climate we decided to award a "Cost of Living. grdnt to our community in February 2024, which allowed u5 to distribute 25 individual grants of £150 each to families most in need. These grants supported essential equipment in the home, mentsl health days such as family trips, and technology such as iPads to help with learning and communication. Our PTEN Counselling Service remained a cornerstone of support, and thanksto a new National Lottery grant of £20,(X)O over two years IAugust 2024 - Au8USt 2026), we are able to ensure its continuation. Alongside this, we launched our online PTENUKI One Lotto, enablin8 SilPPOrters to purchase tickets to help raise funds for our work in an accessible and sustainable way. We also continued to host our monthly PTEN Power Hours, providing a platform for rnedical professionals to connect with our community and share expertise on tOPiCS Such as thyroid health, imfnune deficiencies, and the wider impact of PTEN. We extended this support to sibling5 of patients by collaborating with the charity Sibs, recognising the importance of including the whole family in our care. We hosted 11 online workshops in total across the year. Awareness remained a key priority. The PipgenArtProject combined science and creativity to highlight the impact of rdre genetic conditions. Our Charity Manager, Kelly Kearley, represented the PTEN community on the Medics 4 R¢7re, Rareminds, and On One Condition podcasts. ensuring the PTEN voice reached wider audiences. Kelly also co-authored the Positively Rare book, which PTEN UK & Ireland
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Ststements For year ended 31 December 2024 Charity Number 1172205 was proud to 5UPPOrt. The book brought together stories from across the rare disease community, giving a powerful platform to lived experiences and helping raise awareness of the challengesfaced by families with rare conditions, We were also delighted to become member5 of NORD INational Organization for Rare Disorders). Joining NORD stren8thens our international connections. allows us to share knowledge and resources with other rare disease groups, and ensures that the PTEN community in the UK and Ireland has a voice within a wider global network advocating for research, policy change, and improved support for those affected by rare conditions. We are proud of the progress made in 2024 and remain committed to supporting families living with PTEN through tinancial help, counselling, advocacy, and awareness initiative5. As always, we extend our thanks to our trustees, volunteers, members, medical professiona15, and research partners who make this work possible. FINANCIAL REVIEW Flnancial Posltion This year we Saw the fruits of our labour in terms of fundraising. We were successful in our application for further support for our PTEN counsellin8 service from the National Lottery with a two year grant 1£20,0001 which will help u5 run the serdice until August 2026. In total, our donations plus the fundraising efforts has Eiven u5 income of £47,904 which is an extra £16,000 from the previous year. These funds enabled us as a charity to provide more support for our community, resulting in totsl expenditure of £29,236. We generated an overall surplus of £18,668 for the year (2023: £6,672 surplus). This surplus is split £10,653 in our unrestricted funds and £8,015 in our restricted funds12023: £1,187 unrestricted and £5,485 restricted funds). The grant from The National Lottery was for the specific purpose of counselling and has been accounted for within our restricted funds. Our total funds as at 31 December 2024 stand at £36,70412023:£ 18,036) and is split £23,204 in unrestricted funds and £13,500 in restricted funds (2023: £12,551 unrestricted and £5,458 restricted). The detailed financial statements are included on pages 8 to 13. Reserves Pollcy The trustee5 are mindful of their responsibility towards the charity, the resources they manage and how they have been accumulated. It is the trustees. policy to hold unrestricted general reserves amounting to £2,000 to reflect budgeted and unexpected calls upon resources within the coming year. The reserves target amount is reviewed on an annual basis. This target was achieved as at 31 December 2024, with unrestricted, undesignated funds of £23,204 {2023. £12,551). We prepare a carefully considered budget and cash flow for the year, which are based on historical performance and prudent estimates. We also produce a profit and loss forecast for each major support activity and carefully monitor actual performance versus forecast.
PTEN UK and Sreland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 STRucfuRE. GOVERNANCE AND MANAGEMENT Constitution and Governing Document We are constituted as Charitable Incorporated Organisation ICIOI and our constitution governs our operation as a charity. We were registered as a CIO with the Charity Commission on 22 March 20217. Board of Trustees The Board of Trustees has independent control over. and legal responsibility for the charlS management and administration. The Board's decision making process is informed by charity law and its constitution. Our constitution requires a minimum of three trustees. During 2024, the trustees met four times (every quarterl. This year brought new leadership and expertlse to our trustee board. We welcomed Pete Welch as our new Chair in July 2024, bringing both professional insight and personal passion as a PTEN parent, and Eleanor Welsh. a clinical geneticist, as our new Care and Support Trustee. Appolntment temi In selecting individuals for appointment as trustees, the trustees must have regard to the skills, knowledge and experience needed for the effective administration of the charity. In accordance wtth the constitution appointments are for an initial term of three years. A trustee who ha5 served for three consecutive terms may not be reappointed for a fourth consecutive term but may be reappointed after an interval of at least one year. Trustee Inductlon All trustees complete an induction programme desi8ned to inform them about the charitls structure, objectives, finances and decision making framework and ensure that they are fully aware of the responsibilities of being a trustee. The induction process tskes the form of a combination of meetings and the provision of appropriate reading material including our constitution. annual report and accounts and guidance from the Charity Commission. The Trustees and their areas of focus for the year and up to the date of approval of the Annual Report & Financial Statements were:_ lan Stock- Founder trustee Jack Donnelly {appointed 19 January 2023, resigned 22 July 20241 Peter Welch ( appointed 24 July 2024) Ellie Collins- Marketing and Communications Colette Knight- Care & Support Eleanor Welsh- Care and Support (appointed 24 Juty 2024) Priyanka Tibarewal- Research Dr Katherine Lachlan - Medical Advi50r John Pemberton- Technology (resigned January 19th 2024) Kelly Kearley-Admtnistration & Fundraising
PTEN UK and Ireland Patient Group. Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 REFERENCE AND ADMINSTRATION DETAILS Principal Address 11 Whinchat Close Hartley Whitney Hook RG18 Bankers HSBC UK Independent Examlner Melanie Crooks Associates Limited Bellfield House 33 Stafford Road Bloxwich W53 3NJ Declaratlon The trustees declare that they have approved the trustees, report above on 21 October 2025 Signed on behalf of the charity's trustees bv.. Full Name.. Peterwelch Position: Chair of Trustees Date: 21 October 2025
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 Independent Examiners Report to the Trustees of PTEN UK and Ireland Patient Group - Charity number 1172205 ( "the Charity") I report to the Charity trustees on my examination of the accounts for the Charity for the year ended 31 December 2024 which are set out on pages 8 to 13. Responsibilities and basis of report As the trustees of the Charity, you are responsible for the preparation of the accounts in accordance with the requirement5 of the Charities Act 2011 ("the 2011 Act'l. I report in respect of my examination of the Charity's accounts carried out under Section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions 8iven by the Charity Commission under section 14515llbl of the 2011Act. Independent examiner's statement I have completed my examination. I confirm that no material matters have come to my attention 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 2011 Act: or. The accounts do not accord with the accounting record5. The accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities l Accounts and Reportsl 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. The trustee's annual report is not consistent with the accounts I have no concerns and have 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. r7u /&J Melanie Crooks Melanie Crooks Associates Limlted Bellfi'eld House 33 Stafford Road Bloxwich West Midlands WS3 3NJ Date: 28.10.2015
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 Statement of Financial Activities 2024 2024 Unrestricted Restricted Funds Funds 2024 Total Funds 2023 Total Funds Income and Endowments from . Direct Donations Gift Aid Recoverable Fundraising Donations Fundraisin8 Lottery Grant5 receivable Sundry income Total Income 13,059 289 13,392 414 750 13.059 289 13.392 414 9,739 7,266 20,000 20,750 14,376 30 27,904 20,000 47.904 31,411 Expendlture on . Roi5ing Funds Charitable Activities.. Awarene55 Raising Care & Support Patient Day costs Conferences & Tra+nin8 Charity Management Insurance Bank & Just Givin8 Cost5 Subscriptions Independent Examination Depreciation Sundry expenditure Total Expenditure 766 766 2,517 2.058 4,393 2.058 16,378 10,215 4,537 662 5,333 213 282 192 soo 11,985 259 8,000 213 2S9 213 294 266 400 185 417 288 29.236 24,739 294 266 185 417 17,2SI 11,985 Net Income/(Expendlture) Transfers between funds Net movement In funds Total funds brought fOrard Total funds carried forward 10,653 8,015 18.668 6.672 10.653 12.551 23.204 8,015 5,485 13,SOO 18.668 18,036 36.704 {7581 11,364 18,036
PTEN UK andlreland Patient'Group Trustee's Annual Report & Financial Statement5 For year ended 31 December 2024 Charitv Number 1172205 Balance ShÈet 2024 2023 Note Tangible Fixed Assets Debtors Cash at bank Credltors amount5 falling due wSthin one year Total Net Assets 369 289 1,727 42,041 23,271 15,995) {400) 36,704 18,036 Reptesented by.. Unrestricted Funds Restricted Funds Total Funds 23.204 12,551 13,500 5,485 36,704 18,036 The notes I to 10 form part of these flnancial statements. The financlal statements were approved by the trustees on 21 October 2025 and signed by: NAME Peter Welch {Trustee Kelly Kearley ITru5teel
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 Notes to the Finandal Statements LBasis of Accountlng The financial statements have been prepared in accordance with the Charities Act 20211. applicable accounting standards (FRS102) and Charities SORP and under historical cost accounting. The financial statements comprise of the Statement of Financial Activities, Balance Sheet and associated Notes. The Charitable Incorporated Organisation meets the definition of a public benefit entity under FRSIO2. 2.Golng Concern The financial statements have been prepared on a goin8 concern basis a5 the trustees believe that no material uncertaintie5 exist. The trustees have considered the level of funds held and the expected level of income and expenditure for 12 monihs from authorising these financial statements. 3.Income Income is included in the Statement of Financial Activities when the charity is legally entitled to it, ultimate receipt is probable and the amount to be reco8nised can be quantified with reasonable accuracy. Voluntary income in the form of donations and fundraising is recognised when the cash is received or the financial yearthat the income is stated to relate to. Grants are recognised on a receivable basis when the charity has probable and measurable entitlement to the income {i.e. The conditions for its award have been satisfied). Where the use of the income has been restricted in accordance with the donor/grantee wishes the income is credited to an appropriate fund until it can be Spent for the purposes for which it is 8iven. 4.Expenditure Liabilities are recognised as soon as there is a legal or constructive obligation committing the charity to pay our resources. 5.Funds General Fund The general fund is the charitvs unrestricted, undesignated fund available for any the charity's purposes without restriction. Designoted Funds Designated fund5 are unrestricted in nature and created by the charity's Trustees for a specific purpose. Designated funds may be un designated at any time by the charity's Trustees. Restricted Funds Restricted funds relate to income received which are restricted by the donor or grantee for specific purposes within the overall aims of the organisation. These funds are used in accordance with the specific purposes. 10
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 6. Tanglble fixed assets Tangible fixed asset5 are initially recognised al cost, or for donated assets, at a reasonable estimate of their value on receipt. Depreciation is provided on all fixed a5setS, to write off the cost on a straight line basis over theif expected useful life. For computer equipment this is at the rate of 33% per annum. Equipment Cost: At 1.1.2024 Addition in year At 31.12.2024 554 554 Accumulated Depreclation: At 1.1.2024 Charge for year At 31.12.2024 (185) (185) 369 Net Book Value at 31.12.2024 Net Book Value at 31.12.2023 7.Debtors and Credltors 2024 2023 Debtors.. HMRC Gift Aid Recoverable Grants receivable 1,727 1,727 Z89 Creditors.. Accruals Deferred grant income 995 1,962 5.995 6.962 li
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 31 December 2024 Charity Number 1172205 8.Movement In Funds Baknce at lrtcome Tfansler Balre at 1.1.2024 31.12.2024 Resth'rted Fund5.' National Lottery -Counselling Service 5.485 20,000 20,OCKI 111.985) {11.985} 13,500 13.500 5,485 Unre5trirted Funds.. General 12.551 27,904 (17,2511 23,204 Total Funds 18,036 47,904 129236) 36.704 Prior yeorfigures.. Baknce at Income Expendlt4we Trnn5fer B•14n¢e at 31.12.2023 1.1.2023 Restrirted Funds.. National Lottery -Counsellir8 Service Global Gene5 - Mental Health Support lo,0 4,376 14,376 (4.515} (5.7001 (10,215} 5,485 1,324 1,324 5,485 Unrestrlrted Funds.. General 11,364 17,035 114.524) {1,324} 12,SSI Total Fund5 11,364 31MII (24.739) 18.036 Transfers between funds were as follows Unrestrfcted Restrlcted General General fund to Global Genes fund {1,324} 1,324 This represents the transfer of funds to SUPPOrt the Mental Health Support programme. 9.Trustees and Related Party Tran&irtions The charity maintained insurance for the trustees throughout the financial year ended 31 December 2024 and such indemnity insurance wa5 in place at the date of approval of these financial statements. For the year ended 31 December 2024, the premium cost for indemnity insurance was £213 and the cover was £250,000. 12
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statements For year ended 310ecember 2024 Charity Number 1172205 During the year, no Trustees received renurneration for their role a5 Trustee12023:£nil}. Trustees were reimbursed for out of pocket expense5, totalling £1,221 for 2 trustees12023: £1,700 for 3 trustees). During the year, as allowed under the constitution, a Trustee ( K Kearley) undertook the duties of the charity manager under a contractual agreement. The amount chargeable under this contractual agreement was £8,000 { 2023: £4,667. An amount of £nil was outstanding as the 31 Oecember 2024 (2023:£666). A150 during the year, as allowed under the constitution, a Trustee {E Collins) undertook social media and communications duties by contractual arrangement. The amount chargeable under this arrangement was £330 and no amount was outstanding at 31 December 2024. 10.Comparative Statement of Financial Activlties 2023 2023 2023 Unrestricted Restricted Total Funds Funds Funds 2022 Total Funds Income and Endowments from . Direct Donations Fundraising Donations Grants receivable Sundry income Total Income 9,739 7.266 9,739 7.266 14.376 1,123 820 7,415 96 9,454 14,376 30 17,035 14,376 31.411 Expenditure on . Raising Funds Charitable Activities." Care & Support Patient Day costs Conferences & Training Charity Management Insurance Bank & Just Giving Costs Subscriptions Independent Examination Sundry expenditure Total Expenditure 2.517 2.517 1,164 10,215 10.215 4.537 662 4,537 662 4,643 199 5,333 213 282 5.333 213 282 192 146 192 500 288 500 288 14.524 10,215 24.739 10,212 Net Incomel(Expendlture) Transfers between funds Net movement In funds Total funds brought forward Total funds carried forward 2,511 (1,324) 1,187 11,364 12.551 4,161 1,324 5,485 6.672 (758) 6.672 (758) 11.364 12.122 18.036 11,364 5.485 13
PTEN UK and Ireland Patient Group Trustee's Annual Report & Financial Statement5 For year ended 31 December 2024 Charity Number 1172205 14